HEALTHCARE & SOCIAL MEDIA
464.6K views | +5 today
Follow

What Medical Device Companies Need to Know About Incomplete Social Media Marketing Guidelines

From www.sol8.com

When social media was just getting started a little over a decade ago, it seemed prudent for the FDA to withhold any real decision making on marketing and communication guidelines across those channels until more time had passed. Along the way, we’ve watched social media expand, multiply and transmute in such a way that leaves little doubt it will perpetually be in a state of flux.

But one aspect that’s remained a constant since almost the beginning is social media’s undeniable staying power. As soon as that became apparent, the FDA would have been wise to begin drafting some sort of protocol and updating it accordingly.

Instead, for many years they occasionally iterated their intentions to provide guidance, while still enforcing violations against both postmarketing submission and risk disclosure requirements on social media platforms as if those platforms were any other type of medium.

The problem: social media is unlike any other type of marketing or communication channel to come before it, with interactions taking place in real time, consumers asking for guidance (and expecting feedback) in a public space and third-party users contributing their own sets of data without worrying about validity or permission.

So in 2012, Congress enacted a provision designed to force the FDA into finally establishing its internet/social media promotion policies by July 9, 2014. The FDA responded slowly, and with some points to be desired, when on January 13, 2014 they released a guidance document that would provide some insight into their views on medical device marketing on social media.

Although it was nowhere near comprehensive, it was much better than what little had come before. And so far, it’s all we have.

What We Know Now . . .

One of the biggest problems facing medical device marketers was the FDA’s postmarketing submission requirements, which state that firms must submit copies of all labeling, advertising, mailers or any other promotional materials at the time of publication or initial distribution.

But adherence to this rule was almost impossible when applied to a real-time communications format, which the FDA acknowledged in its new draft guidance. Not only did they announce their intention to use discretion when enforcing postmarketing regulations, but they also released a list of principles which companies can use as a guide when submitting promotional items.

*1. A firm is responsible for product promotional communications on sites that are owned, controlled, created, influenced, or operated by, or on behalf of, the firm. If a firm has any amount of influence over a website, even if it’s only as nominal as editorial or review privileges, the firm is responsible for anything concerning their product that appears on that site. This even extends to comments posted by users.

  1. Under certain circumstances, a firm is responsible for promotion on third-party sites. As with #1, if a firm has even the smallest controlling interest in a site, even if they aren’t the owners or administrators, they are responsible for all product-related content. However, if the firm is merely providing promotional materials to the site, without having any influence over their placement or any other aspect of the site, they’re only responsible for the content they contribute.

Interesting side note: If a firm only provides financial support for a third-party site, but has no control or influence of any sort, the firm is not responsible for any of its content.

  1. A firm is responsible for the content generated by an employee or agent who is acting on behalf of the firm to promote the firm’s product. If anyone employed by a firm in any capacity, whether as a sales representative, blogger, customer care agent, etc., posts any product-related content on any site, whether it’s owned by the firm or a third-party, the firm is responsible for that content.

However, the firm is not responsible for product-related content that is posted on third party sites if the poster has no affiliation with the firm and was in no way prompted by the firm to post the content.

In the same draft guidance, the FDA listed the criteria governing postmarketing submissions for both restricted and unrestricted sites:

  • In the case of unrestricted (public) sites for which a firm is in any way responsible, they’re required to submit the entire site upon its initial launch, including static visual and descriptions of all interactive, real-time aspects. After that, an updated listing of all the firms unrestricted sites should be submitted every month (no visuals needed).
  • In the case of a firm’s interactive or real-time involvement with an unrestricted third-party site over which they otherwise exercise no control, the firm is required to submit the home page, interactive pages and the first communication ever made by the firm (including visuals). After that, the firm must submit an updated monthly list of all such sites (no visuals needed), but should remember to notify the FDA immediately should they discontinue their activity on the site.
  • In the case of restricted sites, or sites that are password protected and/or are not open to the public, the firm is required to make the same initial submissions as in the first two examples, after which they need only submit visuals of any product-related content, even if that content is user generated. This needs to be done on a continual basis, since monthly updates are not permitted for restricted sites.

Since 2014, the FDA has promised there will be more to come, but when that’s going to happen remains a mystery. Although many in the medical device industry were grateful for the draft guidance, just as many felt that it left countless unanswered questions and was too broad in scope. And with every passing year, the considerations keep piling up.

If you’re a medical device manufacturer/distributor who’s tired of navigating your social media marketing alone (and with a poor map), we’d love to talk to you. Solutions 8 is a different kind of marketing company – one that can (and does) successfully market just about anything, but chooses to specialize in medical device marketing.

We’ve worked hard to gain a comprehensive understanding of the unique marketing challenges faced by the medical device industry and we’d like nothing more than to give you a free consultation and explain how we can change everything for you and your company. Click here to get started.

Social Media and the Spread of Misinformation: Taking Back Public Health #esante #hcsmeufr #digitalhealth

From www.medicalbag.com

The online spread of health-related misinformation has demonstrable negative effects on public health. Antivaccine discourse on social media, for example, has been cited as a contributing factor to the rising number of parents who refuse to vaccinate their children.1 Similarly, rumors that circulated on social media during the 2014 Ebola outbreak generated hostility toward healthcare workers, hindering efforts to contain the epidemic.2

In a viewpoint article published in JAMA, Wen-Ying Silvia Chou, PhD, MPH; April Oh, PhD; and William M.P. Klein, PhD, research scientists at the National Cancer Institute, described ways in which medical professionals can curb the spread of health-related misinformation.3

Misinformation is amplified within “information silos” and “echo [chambers],” the authors wrote. Social media feeds are “personally curated” by each individual, thus decreasing the likelihood that users will encounter viewpoints that differ from their own. Misinformation is easily amplified in these social media environments. Research also suggests that “falsehoods spread more easily than truths” on social media and other online forums.4 Mistrust in medical institutions further legitimizes health misinformation in online circles; according to a 2016 Gallup poll, just 36% of individuals expressed “adequate confidence” in the medical system.5Additionally, a 2017 study suggested that 1 in 5 individuals express “skepticism about scientists” of any field.6 To mitigate the spread of misinformation, authors outlined guidelines for clinical practice, research, and public health.

 

To properly curb health misinformation, scientists must first understand the way such information is shared. The authors encouraged the “deployment of innovative methods” such as social network analysis to address misinformation on social media. Surveillance must be conducted to investigate the characteristics of certain information silos and identify which intervention methods may be effective. Scientists must also study the “context of misinformation exchange,” including the social media platform on which the information was shared. The dynamics among users sharing misinformation should also be properly understood before strategies are developed. Additionally, the “reach” and consequences of certain health messages must be understood; real-time behavioral data, linkage to medical records, and marketing research can help elucidate the way in which social media users internalize certain information.

 

 

Beyond research to identify proper means of intervention, the authors wrote, the medical community must also provide support and training for interaction with misinformed patients. Clinicians must be equipped to understand and respond to their patients' concerns, rather than “dismissing [them]…as skeptics.” It is also important for social media platforms to properly assess the credibility of certain content before it is disseminated, the authors wrote. Health-related misinformation can undermine efforts to provide proper health care. Social media platforms that encourage the spread of misinformation must receive due attention from medical and public health professionals to curb these effects.

Reference

  1. Broniatowski DA, Jamison AM, Qi S, et al. Weaponized health communication: Twitter bots and Russian trolls amplify the vaccine debate. Am J Public Health. 2018;108(10):1378-1384.
  2. Jones B, Elbagir N. Are myths making the Ebola outbreak worse? CNN. https://www.cnn.com/2014/08/20/world/africa/ebola-myths/. Updated August 25, 2014. Accessed January 8, 2019.
  3. Chou W-YS, Oh A, Klein WMP. Addressing health-related misinformation on social media. JAMA. 2018;320(23):2417-2418. 
  4. Vosoughi S, Roy D, Aral S. The spread of true and false news online. Science. 2018;359(6380):1146-1151.
  5. Saad L. Military, small business, police still stir most confidence. Galluphttps://news.gallup.com/poll/236243/military-small-business-police-stir-confidence.aspx. June 28, 2018. Accessed January 8, 2019.
  6. Funk C. Mixed messages about public trust in science. Issues Sci Technol. 2017;34(1).
No comment yet.

Improving the reporting of social media recruitment for clinical trials #esante #hcsmeufr #digitalhealth

From www.dermatologytimes.com

The popularity of social media has created a new opportunity for the research community to recruit study participants.

 

Recent data indicate that nearly 70% of U.S. adults use some social media1. Coinciding with the surge of social media adoption, study teams increasingly report the use of social media to enhance recruitment in clinical research with promising but mixed results2,3. Recruitment of study participants is a significant problem, particularly in clinical trials. It remains a critical roadblock to successful clinical and translational research4,5.

In this issue of Dermatology Times, Katz and colleagues describe the results of a targeted advertising strategy on social media and search engines for 150 days. The goal was to recruit patients with moderate to severe atopic dermatitis in a randomized, double-blind, placebo-controlled, phase three trial and to evaluate the efficacy and safety of tralokinumab monotherapy.

While the authors cogently describe the need for new solutions to enhance clinical trial recruitment and the potential of social media, they overlooked the importance of methodology and data transparency. For example, to assess the recruitment success, it is essential to provide the exact measurements (rather than estimates “over 15,000 people being directed to the customized landing page through the advertisement”) and to include proportions such as enrollment rate1* or the message click rate2* to look at potential selection bias and generalizability issues. Equally important is to discern recruitment results by digital platform (they also mention search engine marketing via Google) and to include any data the authors used for comparisons.

Katz and colleagues conclude that the social media approach resulted in “significant improvement compared to similar previous trial engagements.” Another critical aspect is the transparency about the number of social media advertisements (ads) that were posted to promote the trial. Conclusions about the effectiveness of a social media recruitment strategy need to be examined in light of the invested ads budget.

Katz et al. provide valuable data demonstrating that social media can contribute to achieving the study accrual target, but any conclusions about the effectiveness drawn upon this study are inconclusive.

However, the lack of accurate, complete, and consistent reporting of social mediabased recruitment methods and results is not unique to this article. Due to the lack of standards, evidence supporting the efficacy of social media-enabled recruitment is limited, and questions remain with respect to optimal methodologies, benchmarks, metrics, and baseline data, and factors that influence the recruitment success, e.g., study target population, recruitment methods, type of disease or condition a study is recruiting for, characteristics of the recruitment messaging. For example, Katz and colleagues speculate that the pre-qualification via tele-dermatology impacted their recruitment results.

Social media-enabled recruitment should be reported transparently so that readers can follow what was planned, what was done, what was achieved, and what conclusions were drawn. Researchers need to develop and adhere to consistent and transparent methodology and reporting standards if we want to evaluate the effectiveness of social media-based study recruitment and patient engagement reliably and move toward evidence-based strategies. ƒ

References
1. Demographics of Social Media Users and Adoption in the United States. (2018) Available at: http://www.pewinternet.org/fact-sheet/social-media/.

2. Topolovec-Vranic, J. & Natarajan, K., 2016. The Use of Social Media in Recruitment for Medical Research Studies: A Scoping Review. - PubMed - NCBI. Journal of Medical Internet Research, 18(11), p.e286. Available at: http://www.jmir.org/2016/11/e286/.

3. Whitaker C, Stevelink S, Fear N. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review. J Med Internet Res 2017;19(8):e290. DOI: 10.2196/jmir.7071 PMID: 28851679 PMCID: 5594255.

4. Bower, P. et al., 2014. Interventions to improve recruitment and retention in clinical trials: a survey and workshop to assess current practice and future priorities. Trials, 15(1), p.9. Available at: http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-15-399.

5. Treweek, S. et al., 2018. Strategies to improve recruitment to randomised trials. - PubMed - NCBI. Cochrane Database of Systematic Reviews, 78, p.564. Available at: http://doi.wiley. com/10.1002/14651858.MR000013.pub6.

1* The number of people who consented and enrolled divided by the number of people who contacted the study team, for example using a contact form on a study webpage.

2* Number of impressions divided by the number of people who clicked on the link in the message to visit the study page. An impression is a viewable display of a social media post or ad, whether the post is interacted with (e.g., clicked, shared) or not.

 
 
 
No comment yet.

The Use of Social Media for Clinical Trials Patient Recruitment  #esante #hcsmeufr #digitalhealth

From www.trialsitenews.com

Katja Reuter writing for Dermatology Times notes the popularity of social media has created a new opportunity for the research community to recruit study participants.

Recent data indicate that nearly 70 percent of U.S. adults use some social media1. Coinciding with the surge of social media adoption, study teams increasingly report the use of social media to enhance recruitment in clinical research with promising but mixed results. Recruitment of study participants is a significant problem, particularly in clinical trials. It remains a critical roadblock to successful clinical and translational research4,5.

In this issue of Dermatology Times, Katz and colleagues describe the results of a targeted advertising strategy on social media and search engines for 150 days. The goal was to recruit patients with moderate to severe atopic dermatitis in a randomized, double-blind, placebo-controlled, phase three trial and to evaluate the efficacy and safety of tralokinumab monotherapy. Read Ms. Reuter’s article for the interesting details.

No comment yet.

Confidentiality – Seeking Patient Referrals via Social Media #esante #hcsmeufr #digitalhealth

From www.cphins.com

Suppose that a mental health practitioner is active on a popular social media site or other communication sites/networks involving colleagues (other licensed mental health practitioners) and others who are not licensed health care practitioners. Suppose further that a participating psychotherapist posts a request for a referral recommendation from another practitioner, and in doing so reveals enough information about the person or patient to be referred that the identity of that person or patient may be unintentionally revealed or that suspicions may be raised among family, friends, or others. Or, suppose that a psychotherapist posts on a popular social media site his or her desire to obtain a consultation with another mental health practitioner and in doing so, describes the patient or patient’s issues with an abundance of detail? These scenarios assume that the name of the patient is not disclosed.

I create these scenarios because a reader expressed concerns that he/she was seeing an increased number of requests for referrals to psychotherapists on a social media site that gave an abundance of detail about the patient and the patient’s issues. I was rather surprised that the examples cited from a well-known and widely used social media site were quite so detailed about the patient to be referred. Moreover, I was surprised to learn that a licensed mental health professional would solicit such referrals from other practitioners on a site that was also accessed by the general public – that is, by those who were not licensed mental health or medical professionals. My first thought was that there must be better ways to obtain one or more referrals to other practitioners for a particular patient and a particular set of issues than to post something on a site such as, but limited to, Facebook.

Practitioners must always be aware of the duty of confidentiality and must be certain that they are not revealing enough information about a particular patient such that the identity of the patient might be accidentally (or negligently) revealed to others, including family or friends. Merely because a name is not mentioned does not assure that a breach of confidentiality will not occur. It is possible that the patient may become aware of the information posted and might be upset or concerned with the detail given. If a therapist was to obtain a carefully crafted signed authorization from a patient that authorized a detailed request for referrals on a publicly accessed site, then the disclosures made would not constitute a breach of confidentiality. But I would think that patients who are seeking a referral to another practitioner or to a “specialist” of some kind would not react well if asked – “do you mind if I look for a referral for you on the social media site I frequent with many of my colleagues and with members of the general public?”

Suppose a practitioner wants to disregard the above and nevertheless seek a referral to another practitioner by posting something on a social media site. The practitioner should first ponder whether the facts to be revealed are really relevant to obtaining names of other licensees that would make for appropriate referrals. Does it really matter that the client is in his forties, or that the client is a recently divorced dentist whose spouse just left him for the grocery store butcher? Is there another way to seek an appropriate referral without giving unnecessary detail? Of course, if there is appropriate masking that does not change the clinical significance of the information being revealed, masking some or most of the details would be wise. But I nevertheless ask – are the details really necessary? Perhaps it is better to leave the details for the client to explore with the subsequent practitioner.

If the social media group were limited to licensed psychotherapists, for example, and if referrals were sought, it would be less risky to disclose details about the person and the issues involved. Generally (each state’s laws will vary in some degree or in fine nuance), one of the most important exceptions to confidentiality is where a disclosure of confidential information is made to another licensed health care provider for the purpose of diagnosis or treatment of the patient. The disclosures made to other licensed health care professionals would seemingly be for the purpose of obtaining treatment for the patient and would seem to be included within this broad exception to confidentiality (where a signed authorization to disclose is not required). Nevertheless, it is my impression that there are better ways for referring practitioners to make appropriate referrals. There is an expectation in the various mental health professions, either express or implied, that practitioners are knowledgeable about culturally and clinically appropriate referral resources.

I have previously encountered this issue in situations where a practitioner makes a presentation (at a workshop or seminar) to other professionals about the treatment of a particular patient – without using a name, but with an abundance of non-masked detail about the patient. In such situations, another attendee may express some ethical concerns at the degree of detail provided, or may even have a reasonable suspicion of who is being described. I have also encountered this issue when someone writes a paper or a book that similarly gives details about a patient previously treated. What if the patient discovers that the paper or book was written about him/her without prior authorization or consent? Will the fact that a name was not disclosed protect the writer? Did the therapist/writer exploit the patient’s information for his or her own economic gain, and if so, does the patient have reasonable grounds to pursue legal action or to file a complaint?

REFERRALS

Are you aware of any law, regulation, or ethical code provision in your state of licensure and in your profession that clearly defines what is expected when one practitioner refers a patient to one or more other practitioners? Why do so many therapists talk about the need to make three referrals? What liability, if any, does a therapist have for negligently making a referral? Is there a duty, or should there be a duty, for the referring therapist to either check with the licensing board or suggest that the patient  check with the board in order to see if the practitioner to whom the patient is referred has been the subject of disciplinary action? Is the referring therapist ever under a duty to check with the former patient to see if the referral was acted upon by the patient or that treatment is continuing? Rather than referring to a named practitioner, is it appropriate to refer the patient to a professional association’s or other referral service? These are but some of the many questions that may arise when the practitioner is faced with the need or desire to make a referral to one or more other practitioners.

One of the times that mental health practitioners will need to make a referral is when they discover that the patient they are treating requires the expertise or specialized competence of another practitioner. Not all therapists and counselors are competent to treat all patients and all disorders – so practitioners must be sure that they make a referral when their competency is challenged. Some provisions of ethical standards delineate the circumstances when the need for a referral arises (such as, but not limited to, as described immediately above or when a conflict arises), and other provisions may in a broad or general way provide some guidance regarding the ethical obligation(s) when making a referral.

One ethical standard says that when making a referral, the practitioner should take appropriate steps to facilitate an orderly transfer of responsibility. Another ethical standard, when warning against the abandonment of patients, says that if a therapist is unwilling or unable to continue to provide professional services, the therapist will assist the patient in making clinically appropriate arrangements for continuation of treatment. Another standard says that when practitioners refer clients to other practitioners, they insure that appropriate clinical and administrative processes are completed and that open communication is maintained with both clients and practitioners. These standards seem to this writer to be vague and subject to various interpretations – which could affect enforceability. Of course, not all ethical standards are intended for enforcement – some may be intended as mere suggestions or as guidelines, even aspirations.

None of the standards mentioned above define the particular actions that must be taken in a particular case or situation, nor, I argue, should they. What are the appropriate steps? What constitutes clinically appropriate arrangements? What are appropriate clinical and administrative processes? Unless there is a law or regulation that is applicable, the action(s) that must or should be taken in each situation is left to the sound clinical judgment of the practitioner. Thus, when answering the questions asked above, and many others (as I may do in future articles), the answers necessarily depend upon the particular facts and circumstances involved, including the interpretations of applicable ethical standards, guidelines, laws, or regulations.

No comment yet.

Les 50 chiffres à connaître sur les médias sociaux en 2019

From www.blogdumoderateur.com

Chaque année, nous publions un récapitulatif des statistiques des réseaux sociaux. Facebook, Instagram, Snapchat, Twitter, LinkedIn… cet article permet de visualiser les forces en présence et les dynamiques des réseaux sociaux. Au cours de l’année, pour accéder aux chiffres régulièrement mis à jour, rendez-vous sur
No comment yet.

Engaging Transgender Patients: Using Social Media to Inform Medical Practice and Research in Transgender Health #esante #hcsmeufr #digitalhealth

From www.ncbi.nlm.nih.gov

Despite accelerated growth in the field of transgender health, mistrust between trans patients and their providers persists. Insufficient education for providers, research that overlooks patients' foremost concerns, and continued stigma and discrimination in medical settings are among the main barriers leading trans patients to delay or avoid care. Consequently, the transgender community often turns to social media as a self-serve resource for medical knowledge. This article discusses the benefits of directly engaging the trans community using social media to educate professionals, drive relevant research, and inform practice, to ultimately deliver higher quality care.

Keywords: transgender, barriers to care, community participatory research, social media, medical education

Introduction

The transgender community faces many barriers to care; among these are inadequate provider training, lack of information that reflects patients' expressed needs, and discrimination in medical settings.1–3 For decades, trans patients have been filling in the gaps of their own care, often out of fear and distrust of medical professionals.4 Instead of relying on providers, patients frequently look inwards toward their community for medical knowledge and advice. Social media, in particular, enables this self-serve model to thrive.5,6 To improve the quality of trans health care, providers and researchers must not only expand our body of medical knowledge but must also work to reduce barriers to care. In this article, we discuss how providers and researchers can begin addressing these specific barriers by engaging directly with trans voices across all health care touchpoints. Social media provides a useful tool through which the medical community can connect with transgender patients to learn firsthand about their real needs and experiences, subsequently informing practice, education, and research.

Barriers to Care in Transgender Health

Lack of trans-specific expertise has been found to be one of the largest barriers to care, yet the necessary medical curricula are largely absent.2,7 A median of five hours is dedicated to teaching LGBT-related content, and a third of programs reportedly spend 0 h on LGBT health-related content during clinical training.8 Three quarters of medical students report receiving less than two hours of curricular time devoted specifically to transgender clinical education.9 This oversight in education extends to practice; while resources do exist, providers are often at a loss for how to fill in their knowledge gaps.10 In a 2017 study of practicing endocrinologists, 80.6% reported no training on the care of transgender patients, although 80% had treated a trans patient.11 In another recent study, nurse practitioners expressed their frustration at the lack of published evidence to guide practice, turning to the media or their patients for information.12

Despite an increased availability of research in trans health, the answers (and even the questions) that matter most to patients are notably absent from the medical literature. For example, over half (51.5%) of trans masculine individuals bind their chests daily; however, there have been only two studies on chest binding to date.*,13 Similarly, while only one in four trans people access transition-related surgery, a disproportionate amount of clinical research is devoted to surgery.14 The questions raised on social media point to ways in which trans patients are not receiving proper information about their care, as well as felt needs that are being overlooked by current research.6,15

The result is a community hesitant to interact with the medical system. Nearly one-fifth of transgender patients delay health care because of fear of discrimination.14,16 Inappropriate provider behavior, such as purposely misgendering, asking unnecessary anatomical questions, and gossiping or mocking, further dissuade trans patients from seeking care.3,17 Patients of color and/or with disabilities experience higher levels of discrimination, in addition to those facing transportation, financial, or insurance barriers that prevent them from accessing care in the first place.3,7,14,18,19

A first step toward identifying and addressing these gaps in care is to establish conversations that bridge disparate stakeholders with a shared interest in transgender health. Yet even when invited to do so, trans patients may be hesitant to educate medical providers or participate in research.20 Concerns around logistics, fear of being outed, and minimal compensation, along with a lack of awareness of participant opportunities, all contribute to this friction.4,7 Thus, increasing trust between trans patients and providers is a critical element for improving communication between these parties.

Using Social Media to Engage Trans Voices

Other medical fields have recognized the benefits of using online spaces to build trust with patient communities, in part, for the unprecedented access to patient conversations. For example, the field of oncology found that interactions on social media transcended patient-provider hierarchies and facilitated meaningful education.21 Engagement through social media can generate peer-to-peer education and foster support, and debunk health myths.22 Learning about patients outside of clinical settings allows professionals to see their patients as individuals rather than stereotypes, people to fear, medical oddities, or merely “teachable moments.”23

The transgender community thrives on social media as a resource and path to authenticity, permitting the negotiation of what it means to have a marginalized identity, while allowing for anonymity when needed.5,24 Medical professionals can engage with the trans community on an equal plane through online forums (Instagram, YouTube, Facebook, Reddit, and Twitter), where popular trans individuals boast 50,000, 100,000, and even upwards of half a million followers. Social media serves as a platform to discover resources, learn about gender-affirming providers, and build community in the process.5,6 A recent study by Seattle Children's Hospital found that the Internet plays a particularly strong role in the lives of trans youth and their caregivers.15 Another instance of successful patient-provider interaction online can be seen in Reddit's Transgender Health AMA thread. Active participants included prominent trans health providers and institutions such as Dr. Johanna Olson-Kennedy, Dr. Joshua Safer, and Fenway Health; they answered questions posed directly by patients, sharing evidence-based information with the community.

The authors created an online medical perspectives series, Transgender Health: Patients and Providers,§ as another model for promoting patient-centered understanding of trans needs and trans health. Since its launch, over 100,000 views and almost 50,000 unique visitors have found their way to Patients & Providers. The series features guest articles from international providers, representing the fields of psychology, endocrinology, pediatrics, emergency medicine, surgery, social work, nursing, and research, in addition to patient perspectives. By offering themselves as resources, both parties reduce the friction for interactive medical education. The series is hosted on a website** recognized for its accessible intercommunity knowledge, with easy to understand resource articles about nonbinary identity and transition. Medical professionals also make use of this platform, and it is referenced within the UCSF Center of Excellence for Transgender Health Guidelines.†† This dual use by both patients and providers makes it an ideal online space to invite providers into conversations they are already listening to, but perhaps not actively participating in. In one popular article,‡‡ questions were sourced directly from trans community members through social media and reader e-mails, with answers written by primary care physician Dr. Kevin Hatfield. This post-exemplifies active provider engagement with patients' foremost questions and concerns.

However, the limitations to social media must be noted. Anecdotally, some providers reached out to the authors privately (by e-mail or Twitter Direct Message); they were hesitant to publicly endorse practices that are not yet fully supported by medical associations (e.g., starting/stopping hormones and informed consent), even though they use these in their medical practice. While patients are afforded the safety of online anonymity, providers may feel compelled to self-identify, to affirm their legitimacy as professionals. As one commenter shared, “Currently, there's silence and shame on both sides of the Dr.'s table.”§§ Among the technical shortcomings, it can be difficult to quantify the impact of this and other online efforts. Real-time or elaborate back and forth dialogue can be stunted on platforms with character limitations (Twitter), nonthreaded posts (Tumblr), or partial digital privacy (Facebook). Moreover, online samples may skew toward a representation of younger, genderqueer participants; they are not a reflection of all trans identities or needs.25

Conclusion

Our ability to deliver optimal trans-specific health care is severely limited by insufficient trans-specific medical education, a paucity of research that addresses the expressed needs of patients, and discriminatory behaviors in medical settings. Providers guessing what their patients want not only fails to help but can also potentially cause harm. Trans patients need to feel safe enough to seek out trained medical professionals informed by relevant evidence-based research and affirming practices.

The authors recommend using social media to drive professionals' exposure to, and understanding of, transgender lived experiences. Specific engagement tactics can include following blogs and individual accounts, or participating in virtual conversations through community hashtags, to track the diffusion of inaccurate health information, demystify frequently asked questions, or inform crucial talking points overlooked in patient interaction. Virtual interactions also mitigate some of the institutional, logistical, and social barriers that prevent the transgender community from trusting local and global providers in person. In addition, using these transparent data to inform practice and research questions holds institutions and researchers accountable to a public, community audience. Trans-led initiatives on popular platforms bring together both patients and providers as experts of their experience, inviting us all to learn about one another's real needs. Community-driven medical education, research, and practice can expand our notions of transgender health, yielding rich relevant data, and ultimately higher quality care.

Liked, loved, shared: What got physicians talking this year | American Medical Association #esante #hcsmeufr #digitalhealth

From www.ama-assn.org

Gun violence. The fight for gender equity. Physician burnout. Heartbreak at the border. These are among the issues that got people talking and sharing on social media in 2018. In a timely way, the AMA set forth physicians’ views, tools and resources on these and other hot-button topics. Learn about the big moments that struck a chord with patients and physicians on social media.

You can follow the AMA now on TwitterFacebookLinkedIn and Instagram.

Insights on physician burnout spark big reactions

Let’s start with the clear No.

1. This Facebook post highlighted survey research that sheds light on how physician burnout compares by medical specialty and drew thousands of comments, reactions and shares on the world’s most popular social media service.

Regardless of specialty, the evidence shows that what most drives physician burnout are systemic and organizational factors. The AMA offers research, practice-improvement strategies and other resources to transform your practice and address your well-being.

Most viewed

This highly viewed tweet laid out the stakes very simply as “What you need to know about financial planning before starting residency.”

The tweet highlighted a very timely AMA news article, “Financial planning for residency: 3 take-home points,” and earned the most views.

Most popular

This International Women’s Day tweet struck a responsive chord with readers by foreseeing a day when gender equity is the standard.

The tweet highlighted the results of an AMA survey about female physicians’ top concernsand was our most popular in the sense that it drew the most engagement of any kind from readers.

Most shared

A powerful statement from Bobby Mukkamala, MD, an AMA Trustee, rightly earned lots of attention from physicians and other readers concerned about the family-separation crisis at the U.S. border.

This widely shared AMA tweet featured Dr. Mukkamala’s quote: “Children leaving the chaos of their home countries should not be further traumatized by the U.S. government policy of separating children from their caregiver. It’s inhumane and risks scarring children for the rest of their lives.”

At the 2018 AMA Annual Meeting in Chicago, the AMA House of Delegates adopted policy opposing the immigration-enforcement practice.

An Instasmash

This post marking Dr. Patrice Harris’ historic election was our biggest hit on Instagram.

Dr. Harris, a psychiatrist, is the first black woman to hold the office of AMA president-elect. She will be inaugurated as AMA president in June 2019.

Most clicked

This is the tweet that landed the most click-throughs in 2018, and it is no surprise given its compelling topic. “Physician burnout in the U.S. is an epidemic, and most physicians (yes, even the ones you know), are likely suffering from #burnout too,” the tweet says.

The AMA news story link featured, “Every doctor you’ve admired has dealt with burnout,” showcases the burnout stories of six of America’s most accomplished physicians.

Most loved

A post on gun violence that launched a Twitter thread drew more “likes” than any other AMA tweet in 2018. The tweet—posted in connection with the March for Our Lives gun-violence protests—drew upon a column by AMA Immediate Past President David O. Barbe, MD, MHA that was written in the wake of the  Parkland, Florida, massacre. It featured his quote, “We are talking about a public health crisis that our Congress has failed to properly address. This must end.”

No comment yet.

Social media ads shown to help increase screenings for patients with cancer #esante #hcsmeufr #digitalhealth

From www.consumeraffairs.com

For many consumers, it can be hard to keep track of various doctors’ appointments or tests, even though they are beneficial to overall health.

To help combat this issue, researchers from Colorado’s Cancer Screen Program (CCSP) are looking to attempt a different tactic. They’ve tried targeting patients using a more modern approach.

The group was hoping they’d get more people in for colonoscopies and other pre-cancer screenings if they used various advertising avenues, including Facebook, radio ads, and text message reminders that encourage patients to follow through with these critical appointments.

Seeing what works

The researchers began by spreading the word about the text message reminders through Facebook ads, local fliers, and radio bits. “The idea was to start a text messaging campaign for cancer prevention,” said CCSP Director Andrea Dwyer.

The advertisements urged consumers to sign up for text message updates about when they should be making appointments for cancer screenings -- specifically, colonoscopies. While the researchers found that both fliers and radio ads were unsuccessful, they did have better luck with Facebook.

Over 95 percent of users that signed up for the text message updates via Facebook advertisements actually utilized the service being offered. They kept their phone numbers enrolled and were seeing the reminder messages.

“Facebook was a good mechanism,” Dwyer said. “Engagement was high with Facebook ads, and those who viewed ads clicked through to the sign-up page, an indication of intent to enroll.”

Moving forward, the group is hopeful this initiative can be helpful for people -- particularly those in more rural areas. They would also like to see patients automatically signed up for these reminders at their primary care offices, and then have the choice to opt out, rather than the other way around.

Facebook under fire

Despite the positive results these researchers received from utilizing Facebook ads, it hasn’t always been positive for the social media giant -- especially where ads are concerned.

Earlier this year, the company rolled out a new identification process for anyone trying to advertise a political message.

Amidst the massive scrutiny following the Cambridge Analytica scandal, Facebook is trying to get back on its users’ good sides and ensure that their data remains private. This move explicitly notifies users of any ad that is political, and makes the authorization process stricter for anyone looking to advertise anything political.

No comment yet.

Social Listening to Understand the Unmet Needs of Patients

From corp.inspire.com

Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than in rare diseases, where the rarity of the illness may lead to a scarcity of available, approved pharmaceutical treatment options. Many patients are left to turn to off-label medication use in the effort to get the best solution possible. Even then, these treatments do not always offer a “cure.”  Patients may not be able to fully resolve symptoms, and they may be saddled with additional side effects or complications that often make medications more trouble than they’re worth.

Not willing to accept this, and wanting to take control of their health and care, many patients turn to changes in lifestyle and diet, as well as incorporating “alternative” therapies such as acupuncture or dietary supplements as helping to fill the gaps of their pharmaceutical treatments.  They actively promote that there is no one-size-fits all solution, and that taking a holistic approach that blends diet and lifestyle change and pharmaceutical treatment can offer a tailored treatment plan that can yield the best results.

Recently, Inspire conducted social listening research to learn more about patients living with a rare immune disorder. In our research we found that patients focused on a holistic treatment plan with dietary changes, restrictions, and dietary supplements as part of that plan. Their real-world online communications indicated that they value taking control of their health. Patients considered both pharmaceutical medications and dietary specifications, including supplements, as integral to their treatment journey.

Despite this, many indicated they were receiving little or no counsel from their physician. Many of their online discussions were motivated by a lack of discussion about lifestyle and diet with their physicians, leading them to explore other options on their own.

A member of a rare disease community on Inspire asked,

“all of the alternative remedies that people recommend in this forum have never been mentioned by [the doctor] to my dad. do you all find out about these alternative treatments through your doctors or through online research? do any of your doctors believe in or support alternative remedies?”

This sentiment points to a communication gap between physicians and patients that could have dangerous implications. For example, a subset of patients from our social listening study mentioned using curcumin, a naturally occurring chemical in the spice turmeric, to improve their condition. Yet turmeric has been shown to have detrimental side effects for patients with this rare condition.1

Many people do not realize that dietary supplements are regulated as food. The Dietary Supplement Health and Education Act, passed in 1994, allows these products to be sold without testing for safety or effectiveness and without information on adverse effects or packaging that is child-resistant.2  Doctors are not having conversations with their patients about supplements as part of their treatment plan and many can be left in the dark about potential adverse events or even potential positive outcomes. Most patients actively say that supplements are not the sole answer, but may be one piece of a better solution, and they are willing to try anything.

Another member of the rare disease community has said,

“IMHO, when you are ill, ANYTHING that will make you feel better is worth a try as long as it does no harm. Not every “cure” will work for an individual because we are individuals.”

Overall, many patients with rare disease place high value on a holistic approach to their care, and notice the biggest improvement in their symptoms when incorporating lifestyle changes, diet adjustments, and even supplements alongside their pharmaceutical regimens.  While patients receive information on the clinical side of their treatment plans, they often lack counsel about how other supplements may affect their disease, leaving them to use trial and error and crowd-sourced knowledge on the Internet to direct their efforts.

An Inspire case study, “Understanding patient language, sentiments, perceptions and journey with Inspire Insights Discover: Social Landscape,” elucidates and further expands on this and other findings.

No comment yet.

Social media benefits for health care providers

From wipfliwebmarketing.com

Social media benefits for health care providers are evident in the statistics that show how consumers get information and how they research and choose their health care professionals. Regardless of the size or type of a health care organization, social media provides a way for health care providers to promote their practices, services, and encourage patient engagement, all with the goal of building awareness and communicating health-related information.

Why should health care providers use social media?

Why should health care organizations devote time and expense to social media?  Today’s patients are demanding a lot more advice than “take an aspirin and call me in the morning.”  Today’s patients  want information and knowledge, and they want it quickly. They expect to easily find answers to their health questions and concerns, and social media has the ability to provide that to them.

A Pew Research study done in the first quarter of 2018 shows that 80 percent of social media users have looked for health information online.

Among physician practices, 53 percent demonstrate an understanding of the need to communicate with their audiences  via social media, and have a Facebook page, according to an article citing various sources on getreferralmd.com. The article also states there’s a high trust level among consumers regarding Facebook posts from physicians, with 60 percent saying they trust doctors’ posts. And, social media is an effective way to reach baby boomers. 43 percent of that demographic reportedly use social media for health care-related information.


What content are doctors posting on social media?

What types of information are doctors posting on social media? They are posting links to articles published on their blogs, medical studies, information about leading a healthy and active lifestyle, alerting consumers to health issues, and posting calls-to-action, such as reminding people to get a flu shot. All posts need to adhere to  HIPAA by respecting the privacy of patients.

 
 

Social media channels used by health care professionals

Here’s a look at social media channels used by a variety of health care professionals and 6 examples for each one about the types of information they are posting.

 YouTube Content posted by health care organizations

  • Virtual tour of the organization’s facility
  • Exercises to help back pain
  • Tips to get a good night’s sleep
  • The benefits of vitamin D
  • Nurses speak about the benefits of working at their hospital
  • Activities and outreach benefiting a community

Facebook content posted by hospitals

  • Announcing awards they are presenting or receiving
  • Seeking volunteers
  • Posting job openings
  • Details about community events they are hosting or participating in
  • Patient success stories (These need to have the consent of the patient)
  • Tips for healthy living such as healthy eating tips

Twitter posts by health care providers

  • Links to blog posts on provider’s or colleague’s website
  • Information and link to new health and medical studies
  • Clinic hours and information
  • Hosted Twitter chats on topics such as dementia, depression, hospice care, women’s health, and more. (These need to be identified by a hashtag, such as #drnancydementia).
  • Job fair announcements
  • Flu shot reminders

LinkedIn posts by health care practitioners

  • Job announcements
  • Recognition from the media or the community
  • Short video from doctors explaining advances in specific treatments
  • Information about conferences that providers are speaking at or participating in
  • Information on new medical research and studies
  • Employee recognition
 

Pinterest posts by physician practices

  • Infographics with how-to information, such as steps women can take to prevent heart disease
  • Link to health care advocacy groups
  • Link to new research and medical studies
  • Link to boards on Pinterest that others have created with healthy activities, healthy eating, and healthy recipes
  • Information about symptoms of specific diseases
  • Details about how to prepare for specific medical procedures.
 
 

How patients engage on social media

In addition to patients wanting good content, many also want to comment on posts and have other interactions. Without giving medical advice, health care professionals can engage with patients by providing information about services offered, details on new studies or research, and information explaining any health alerts. This can be done through Twitter chats, Facebook groups, YouTube, or Vimeo. With a large enough following, discussion and comment can ensue.


Paying for posts on social media

Posts by businesses on Facebook are now reaching fewer people, which is why it can pay to advertise on Facebook. When advertising, health care professionals can target their audiences by their demographics and geographic locations, making the post reach more people, and reaching those audiences that practitioners want to hear their message.

Pay attention to online reviews

Online reviews are now the new word of mouth for recommending health care providers. Consumers take notice of reviews and use them to make decisions when choosing a provider.  According to reputation.com, 80 percent of those surveyed from throughout the U.S. said online ratings and reviews influenced their choice of a provider. Some of these are Yelp, HealthGrades, GoogleMy Business, Facebook, ZocDoc. Healthcare providers should claim their profiles on these sites to make sure it has accurate location and service information and monitor sites to be able to respond to reviews.

No comment yet.

Helicus: les premiers vols de drones médicaux pour l’automne 2019 à Anvers  #esante #hcsmeufr 

From www.numerikare.be

Le tout premier centre de contrôle pour des vols de drônes médicaux a ouvert ses portes en Belgique à Anvers. Helicus espère pouvoir effectuer les premiers vols de drones entre hôpitaux anversois à l’automne 2019.

No comment yet.

Frontiers | Possibilities and Pitfalls of Social Media for Translational Medicine #esante #hcsmeufr #digitalhealth

From www.frontiersin.org

We live in an age where the sharing of scientific findings and ideas is no longer confined to people with access to academic libraries or scientific journals. Social media have permitted for knowledge and ideas to be shared with an unprecedented speed and magnitude. This has made it possible for research findings to have a greater impact and to be rapidly implemented in society. However, the spread of unfiltered, unreferenced, and non-peer-reviewed articles through social media comes with dangers as well. In this perspective article, we aim to address both the possibilities and pitfalls of social media for translational medicine. We describe how social media can be used for patient engagement, publicity, transparency, sharing of knowledge, and implementing findings in society. Moreover, we warn about the potential pitfalls of social media, which can cause research to be misinterpreted and false beliefs to be spread. We conclude by giving advice on how social media can be harnessed to combat the pitfalls and provide a new avenue for community engagement in translational medicine.

 

Introduction

The emergence of social media has changed the way we communicate and allows for knowledge and ideas to be shared with an unprecedented speed and magnitude. Similarly, an exponentially increasing amount of research about social media is being published (Figure 1). Social media come in a variety of forms, including collaborative projects such as Wikipedia, (micro)blogs like Twitter, content communities like YouTube, social networking sites like Facebook, and gaming communities like Second Life (1). These platforms are accessible to all and provide forums where people can freely share thoughts, opinions, and knowledge without—in general—any form of censorship or fact-checking.

 
FIGURE 1

Figure 1. Number of publications found on PubMed with the search term “social media,” as shown by publication year.

 
 

Several groups have addressed how social media are used by the research and medical communities. Medical researchers have shown doubt about professional use of social media, describing it to be incompatible with research (2). Social media are mostly used for personal and less for professional purposes (34). Yet, on the level of society, social media have great potential. There are many examples of its use for public health and prevention purposes (56). Additionally, the rapid dissemination of research findings and the spreading of knowledge to society has increased public interest and involvement in research. Consequently, patients increasingly can and want to be part of developing solutions for their illness (37).

The use of social media for purposes of implementation and translation of research is still in its early stages. At the same time, social media are clearly being used by both patients and professionals for personal content and information sharing. Various efforts of using social media for research are also increasing. Thus, it is important to raise awareness and understanding of the possibilities and pitfalls that social media present to the research and medical communities as well as to regulatory bodies, patients, and industries. Therefore, in this study, we aimed to address both the possibilities and potential pitfalls of social media for translational medicine. We aimed to provide a brief and broad overview of this topic that could steer the community to be more mindful when using social media. A comprehensive review of all different aspects relating to social media and translational medicine is beyond the scope of this perspective article.

Possibilities of Social Media for Translational Medicine

Rapid and Easy Dissemination of Research

Social media are widely used all over the world. Facebook, for example, had an average of 1.45 billion daily active users and 2.20 billion monthly active users in March 2018 (8). With this many users, social media provide platforms for researchers and institutes to quickly disseminate their research plans and findings to a greater public. Through online pages of journals, associations, newsgroups, and direct-sharing, it is relatively easy for researchers to reach a broad audience compared to the more “conventional” sharing of knowledge through publishing in scientific journals. Relevant research findings that are interesting to the community may rapidly spread through social media and go viral. This way, social media may be used to rapidly spread and implement public health findings to the general public. An additional benefit is the easier recruitment of traditionally “hard to reach” populations for medical research (911). Furthermore, it increases the chances of research being picked up by peers and stakeholders (4). Faster dissemination of research findings might also prevent other research groups from repeating the same research, decreasing the potential waste of resources. Recently, tools were developed that visualize the magnitude of impact of social media on scientific publications. This is important, as number of tweets within the first 3 days after publication of an article was found to predict which articles would be highly cited on Google Scholar or Scopus (12). The most commonly used tracking tool is Altmetric, which tracks the amount of rumor about an article on nearly all professional and social media outlets (13). For example, an article about the association of fats and carbohydrates with cardiovascular disease published in medical journal The Lancet was at time of writing only cited by 21 articles (14). However, the real “buzz” was generated by 8,313 tweets, 450 Facebook posts and 168 news stories, adding it to the top 5% of the most discussed publications of the year (14).

Critical Review of Existing Articles and Raw Data Sets

In this era of exponentially increasing numbers of publications, using the reviewing power of the scientific community is an opportunity that should not be missed in order to improve overall research quality. As an extension of recent developments toward more transparent peer reviewing, several social platforms that allow open peer review have been developed, encouraging readers to critique existing publications in-depth. In addition, users are stimulated to upload raw data sets as well, including negative results that might otherwise never have been published, thereby counteracting the effect of publication bias (15). However, the scale of impact of open review might be limited to high-profile work that raises concerns, as those are more likely to attract attention (16).

Possibilities for Raising Funds for Research

With its fast dissemination of information and large number of users, social media platforms have the potential to broadly raise awareness for medical research and specific diseases. Social media platforms have been demonstrated to play an important role in reaching potential donors and raising money in crowd funding campaigns (17). In 2014, $115 million was raised from the Ice Bucket Challenge on Facebook for research into new treatment strategies for Amyotrophic Lateral Sclerosis (ALS) (18). In 2016, a 6-year old Dutch boy who was recently diagnosed with a pontine glioma raised € 2.6 million for the Dutch Red Cross by daring people to paint their nails and post a picture on social media (1920). Moreover, a social media-based fundraising contest launched by the University of California San Francisco (UCSF) raised more than $1 million for the UCSF Benioff Children's Hospital, surpassing their initial fundraising goal 10-fold (2122). Thus, with the large audience that can be reached through social media, new opportunities for raising funds arise.

Networking Between Clinicians, Researchers, and Patient Groups

Keeping an up-to-date online presence on social media may prove valuable for clinicians and researchers. Social media create an accessible platform for peer-to-peer discussions and form an increasingly important networking tool. Depending on the platform used, potential target audiences include professionals as well as patient representatives.

Social media outlets also enable patients and patient representatives to efficiently unite into groups. This may be especially beneficial for patients with novel or rare diseases (23). In addition to providing guidance, advice, and support to peers, these platforms may be used to exchange and seek medical information from each other and from medical professionals (24). A unique opportunity for clinicians and/or researchers lies in initiating these groups, which facilitates immediate contact with patient groups. This can provide the researcher with valuable first-hand information and enable patients and their representatives to directly influence research and prioritize projects (25). Similar collaborations on social media between patients, clinicians, and researchers have been shown to contribute to overall scientific knowledge (25).

Big Data Analytics for Prediction Models and Assessing Trends/Outbreaks

Social media outlets have the potential to be used as exponentially growing, observational datasets (2627). A well-known example of big data research performed on online data is the prediction of global influenza outbreaks by analyzing the number of searches of the word “influenza” or symptoms of influenza-like illness on Google (also known as Google Flu Trends, currently discontinued) (28). The same can be done using data social media such as Twitter. For example, based on data from Twitter posts (tweets) researchers were able to detect increases and decreases in influenza prevalence with a 85% accuracy (29). Another example is a study that found that a model that analyzed language expressed on Twitter was better at predicting atherosclerotic heart disease mortality than a model that combined 10 common risk factors such as smoking, diabetes, and hypertension (30). Social media have also been demonstrated to contain information on health-related behaviors, such as smoking (31), sexual risk behavior (32), and sedentary behavior (33). Finally, they could be used to monitor public opinion on important health topics, such as vaccines (34) and opinions on specific projects or studies (35).

Potential Pitfalls of Social Media for Translational Medicine

Lack of Peer Review and Filtering of Quality

The increased speed and magnitude of the spread of scientific findings through social media comes at a price. There is no system for peer review or filtering of social media, which means that any idea can be spread; even if it is fabricated or not supported by evidence. The vast majority of social media users do not have a scientific background and may be ill-equipped to judge the quality of evidence and sources. For example, people might perceive a blog or advertisement stating “proven by science” as just as trustworthy as a research paper in a peer reviewed scientific journal. However, most people will never read the latter; full research articles are simply not as fun and easy to read as readily digestible news items on social media.

Fake News Spreads Fast and Is Difficult to Refute

Fake news often disseminates rapidly through social media. A recent study compared the differential diffusion of ~126,000 verified true and false news stories through Twitter. Worryingly, the study revealed that false stories spread much faster, further and more broadly than did true news stories. True news stories rarely spread to more than 1,000 people, whereas false stories often reached up to a 100 times more people (36). Similarly, false stories spread several times faster (36), proving what Charles Spurgeon's already asserted in 1855 “a lie will go around the world while truth is pulling its boots on” (37). False stories are generally more novel and trendy than true stories, which are often more sober and nuanced, and it is part of human nature to be attracted to novelty (38). Novel information is most valuable to decision-making (39), and surprising content can induce physiological arousal that encourages people to spread information and cause content to go “viral” (40).

Once a fake story has spread, it becomes increasingly difficult to refute it. This principle is generally known as Brandolini's law, or the “Bullshit Asymmetry Principle”: the amount of energy needed to refute bullshit is an order of magnitude bigger than that needed to produce it (41). Often, the fake news being spread is relatively harmless and primarily amusing. For example, a story by a doctor about a baby boom in Iceland 9 months after a football victory has gone viral, even though it was debunked by statistical analyses (42). Unfortunately, there are also examples of pervasive fake news stories that endanger public health. Perhaps the most famous of these stories is the case of Dr. Wakefield, who wrote an article that suggested a link between the MMR-vaccine and autism (43). The study was soon discovered to be fraudulent, the article was officially retracted, and Dr. Wakefield's UK medical license was retracted (44). It is now 14 years after the retraction of this article, but its fraudulent results continue to refrain people from taking vaccinations (45). A search on Facebook reveals 109 public pages and 94 discussion groups about vaccines with collectively more than a million members and followers, such as @thetruthaboutvaccines (136 k followers) where daily memes are posted to warn people about putative risks of vaccination, including autism. Psychological studies have shown that incorrect memories continue to influence decision making even when you are aware that the memory is false (46), which may explain part of the persistence of these stories. Similarly, most strategies to correct vaccine misinformation are ineffective and could even backfire (47). With fake news being this difficult to refute, it invites the question whether the dangers of the fast and broad dissemination on social media outweigh the advantages.

Misinterpretation of Research

Aside from fake or fraudulent research being spread on social media, there is also the risk of genuine research findings to be misinterpreted. Conclusions of research findings are often simplified and overly extrapolated in the media. A prime example of this happened in 2015, when a study on cancer risk was published (48). The authors concluded that 65% of the variation in cancer risk among different tissues could be explained by the total number of stem cell divisions and thus “bad luck” (i.e., random mutations arising during DNA replication in normal, non-cancerous stem cells). Even though the study did not explore the causes of cancer, major news headlines (mis)interpreted: “most cancers are caused by bad luck–not bad judgement, says study” (49), “most cancers are ‘caused by bad luck–not lifestyle”” (50), and similar titles (51). Six days after publication, an additional press release addressed these erroneous conclusions, but they had already been shared on social media extensively. This exemplifies the damage that can be done when research findings are misinterpreted and spread to the general public.

Dissemination of Pseudoscience Through Social Media

The line between science and pseudoscience is often blurred and it is difficult to determine what is true and false (5253). Sometimes, pseudoscientific information can give false hope to patients with disease. Moreover, while pseudoscientific supplements are often relatively harmless, there are also dangerous advices and practices, which are readily being spread through social media. For example, the use of alternative treatments and supplements without proven efficacy (52) are often promoted through social media. Moreover, multiple procedures for tampering with existing drugs can be obtained via the internet (53). These procedures are illegal and unconfirmed to result in the drug formulation of interest, which in some cases can even lead to (fatal) intoxications (54). This makes the spreading of pseudoscientific findings a potentially harmful situation.

With the increased use of social media, the public is paying closer attention to bloggers and celebrities—regardless of their medical or scientific background—than to experts in their respective fields of interest. For example, Dr. Mercola, an osteopathic physician, has almost 2 million followers on Facebook, a strong online presence and daily emails to subscribers where he pushes “alternative” or “miracle” supplements to the masses. However, in 2016, Dr. Mercola, was ordered to refund customers up to $5.3 million for the false advertisement of his own company's tanning beds that he claimed would reduce chances of getting cancer. This was not his first trouble with regulators: the US Food and Drug Administration (FDA) warned him three times between 2005 and 2011 for violating federal laws for marketing a device he claimed was an alternative to mammograms and for making unproven claims about dietary supplements (55). Dr. Oz is another proponent of pseudoscience and “miracle cures” for an array of conditions. He has 6 million Facebook followers and his own television show. Perhaps most notable is his persistent advertising of “miracle” weight loss supplements that will be effective with little to no exercise. He was criticized by the Senate in 2014 for such unsupported claims for specific supplements and was called to be removed from the faculty at Columbia University, where he worked as a cardiothoracic surgeon. During his testimony, Dr. Oz acknowledged that many supplements he lends support to would not stand up to scientific scrutiny (56) and a recent study confirmed that most of his claims were not supported and, in some instances, contradicted by evidence (57). These instances are just the tip of the iceberg when it comes to examples of pseudoscientific ideas being spread to a large audience.

How to Best Use Social Media

In 2016, politician Michael Gove famously claimed “people have had enough of experts” (58). This assertion was confirmed when the majority of the UK voted to leave the EU against all expert advice. What does this mean for us as a research community, the “experts” on healthcare, and how can we use social media to combat fake news and pseudoscience that could endanger translational medicine and public health?

We believe that we, as a research community, have a responsibility to use social media to spread research findings of public interest and to combat fake news that can be harmful to society. One way to counter the dangerous spread of misinformation is for scientists to critically evaluate the scientific news stories and report inaccuracies in order to correct or refute them. As news media outlets are more likely to report data that are compelling or sensational, it is essential to provide information that is interesting to the general public while at same time maintaining standards for reporting the accuracy of the relayed information (59). Another possibility is for the scientific community to use a rating and online review system similar to travel-review websites such as TripAdvisor, in order to establish consensus about the validity and quality of research and health claims that are circulating on the internet (41). Moreover, several social media groups have been established specifically for refuting false news, such as the Facebook and Twitter group “Refutations to Anti-Vaccine Memes” (@RtAVM), which has 233,871 members that aim to refute fake news stories about anti-vaccine movements by responding with rational arguments and counter-memes that dispel false-beliefs. However, confirmation bias can be strong and it remains to be seen whether people with opposing views will be convinced or even read such pages with opposing views.

Another approach for scientists to reach people with opposing views is to think small and to begin with sharing information within their immediate social network. Many scientists have several hundreds of social media connections, 519 on average, and these personal connections could mean that people trust and value their opinions, especially in their field. It has been suggested that every scientist can be a “nerd of trust” within their network of friends and family, and collectively, we as a scientific community could have the potential to influence the opinion of a large part of society (60).

Conclusion

We live in an exciting age, where social media allow for unrestricted spreading of scientific findings at an extraordinary pace, which brings major advantages for translational medicine, but comes with several potential dangers and pitfalls as well (as summarized in Table 1). We hope that this perspective article helps translational researchers to tackle the challenges and harness the possibilities of social media for the advancement of science.

HEALTH CARE's curator insight, January 14, 4:00 PM
buy-fildena-online/

Medical Students Are The New Wave Of Social Media Influencers #esante #hcsmeufr #digitalhealth

From trendingallday.com

Instead of turning in their stethoscopes for a digital career, these medical students are leveraging their expertise to become social media influencers.

Dr. Pimple PopperDr. Miamiand Dr. Ghavami may have unknowingly inspired the current generation of medical students to become social media celebrities or ‘Influencers.’  The aforementioned medical professionals get candid about their day to day lives as surgeons and dermatologists on YouTube and Instagram.  They have no problem showing all the gory and often gooey aspects of their jobs.  But is it wise for medical students without proper experience, certification, or an official MD title to do the same?  One current medical student and writer, Vishal Khetpal, doesn’t seem to think so for a few reasons.

1. Glamorizing the mentally draining and sometimes private aspects of medical school seems unethical.  Mixed between these posts are also ads or sponsored content for medical related products and supplies.  When it comes to the study material, equipment, and even clothing that a doctor or aspiring doctor promotes, most would hope that it would be due to how accurately and safely it helps them care for their patients. 

“these accounts posted long reflections after anatomy lab sessions, video stories of students huddled around a defibrillator during a CPR training session, pictures of neat study spaces featuring board-prep textbooks next to cups of artisan coffee, and 5 a.m. selfies taken in the surgery locker-room before assisting with a C-section… interspersed, and even integrated, into those relatable moments were advertisements and discount codes for study materials and scrub clothing brands,” Vishal wrote for Slate.com.

2. Often medical students are tapped to promote products that are unrelated to their expertise.  Once they reach a certain level of success, any brand will reach out including brands hocking “supplements” and products labeled as “healthy.”  

“Some accounts featured sponsored posts advertising watches and clothes from Lululemon; another linked back to a personal blog that included a page that allowed followers to “shop my Instagram.” A popular fitness-oriented account, hosted by an aspiring M.D., promoted protein powder and pre-workout supplements. A future dermatologist showcased skin care products. Another future M.D.’s account highlights the mattressescustom mapsfurniture rental services, and food brand that, according to the posts, help her seamlessly live the life of a third-year med student.”

3. Students don’t always have enough life experience or the knowledge to responsibly pursue a social media career which requires them to showcase their profession, promote questionable products, and somehow maintain the ethical standards required of doctors.

“But for less experienced medical students, the story becomes more complicated. We, only beginning our careers in medicine, sit at the bottom of medicine’s totem pole, lacking the volume of clinical experience of practicing physicians.”

“It practically invites us to share professional opinions alongside personal views, where posts and tweets can easily get misinterpreted. Is a doctor’s personal devotion to a product an endorsement that it’s a good medical choice for everyone? The uncharted ethics of social media are already confusing, and that’s before you add in the influence of outside interests, many of which are ready to take advantage of students’ ability to offer some stamp of medical authority to the general public about a product or idea without asking too many questions.”

Seeing the day to day lives of doctors and aspiring physicians is interesting but is it blurring the line of ethics?  Hit us up on social media @trendallday to let us know your thoughts!

Ferreting out prescription drug scams on social media  #esante #hcsmeufr #digitalhealth

From www.statnews.com

Are you in pain?”

Millions of Facebook users saw an ad asking this question and suggesting that relief was available by clicking here. Those who clicked were presented with a pop-up survey that sought more information about their pain condition, along with insurance and personal contact information. For the unsuspecting folks who filled out the survey, their involvement in a multimillion-dollar fraudulent prescription drug scheme had just begun.

I head a team of investigators at Express Scripts. We spend each day identifying and tracking social media scams that target vulnerable individuals looking for relief from pain and other ailments. Facebook and other social media platforms are the latest breeding ground for prescription drug fraud perpetrated by physicians and pharmacies who’ve been recruited by third-party “marketing firms” posing as telemedicine companies to sell high-cost medications at extra-inflated prices to consumers’ health insurance plans.

ADVERTISEMENT

The scheme often works like this: Once you’ve given your phone number, you get a call from the marketing firm. A representative asks questions about your condition and your health insurance provider. Most states have a patient counseling prerequisite that requires a patient to have a consultation with the clinician prescribing a medication and/or the pharmacist filling it. Sometimes this conversation, or a perfunctory telemedicine call with a health care provider, is claimed to fulfill the patient counseling requirement.

With little or no understanding of your medical history or condition, a physician who is in on the scam writes a prescription for an expensive pain drug, typically a topical application such as lidocaine cream, that is usually available over the counter at a fraction of the cost. The prescription is sent to a specific mail order pharmacy that is also involved in the scam. Some days later, you receive the medication at your doorstep. Most often the copay has been waived, and the insurer is left to pay the bill for the medication.

Medicare used to be the primary target of this type of fraud. But as the government aggressively pursued these schemes, the perpetrators shifted their sights to consumers with commercial insurance. The schemes take advantage of widely varying state laws governing pharmacy and telemedicine practices. They can blur both legality and law enforcement jurisdictions when prescriptions are sent across state lines through mail order pharmacies. Telemedicine, which provides some people with much-needed access to health care practitioners, has been harnessed for these prescription drug scams and contributes to their proliferation.

In some cases, the scammers prey specifically on people with insurance plans that do not allow the insurer to restrict the prescription of specific medications. Such restrictions are often absent in plans that allow a more generous benefit, such as union-provided plans.

In one case that our team investigated, a physician in the Dallas area wrote almost 3,000 suspect prescriptions for patients, almost all of them during a nine-month period, costing more than $4 million. To put this into perspective, the average cost for each of these prescription claims was around $1,400, whereas many of these medications could be purchased over the counter or as a prescription for less than $50 each.

Using advanced data analytics that compared prescribing patterns of specialists in the physician’s area, we were able to identify his prescribing behaviors as potentially fraudulent and reported him to the FBI for investigation. Once aware that he was under scrutiny, the physician ceased writing all prescriptions for these high-cost drugs.

Yet the scam continued. Another Dallas-area doctor, likely recruited by the same “marketing firm,” began writing an excessive number of high-cost prescriptions for the same patients as the doctor originally involved in the fraud. In a four-month period, he wrote more than 1,000 prescriptions for drugs that cost a total of $1.75 million. Our investigative team followed the prescription trail to this second physician, who we also reported to the FBI.

So far this year, we have referred 12 prescribers to 18 separate state medical boards who racked up more than $17 million in prescriptions. We have also shared information with the FBI about an additional eight prescribers with a combined drug spend of almost $14 million. And this is just the tip of the iceberg.

Leveraging big data to identify the perpetrators of prescription drug scams has been an essential tool in ferreting out these fraudulent players.

An even better way to halt these scams is for consumers to never click on beguiling ads in the first place — and, if they do, to never give out personal or insurance information when asked for it online. Also be wary of anyone offering free medication on social media or rewards such as gift cards for filling a prescription. And as we enter an age when telemedicine is becoming a more common form of care, it’s especially important to make sure that the clinician on the other end of the line is trustworthy.

If you’re solicited by a physician on social media, assume he or she is more interested in money than in your health.

Pharma View's comment, December 27, 2018 6:02 AM
http://pharmaview.info/pharma-contract-manufacture/
Top Pharma Contract Manufacturer Companies List of India | Pharma View

$2M Grant Expands Social Media Intervention to Reduce Skin Cancer Burden #esante #hcsmeufr

From cinj.org

A five-year, $2,074,932 grant (R01CA221854-01A1) from the National Cancer Institute (NCI) awarded to Rutgers Cancer Institute of New Jersey Associate Director for Cancer Prevention, Control and Population Research Sharon L. Manne, PhD, will support the expansion of a behavioral intervention delivered through the social media site Facebook. The aim is to improve skin exams and sun protective behaviors among young melanoma survivors and their families.

“According to the Skin Cancer Foundation, the risk of developing melanoma is more than six times higher among young adults than it was 40 years ago. Melanoma is the most common malignancy for young adults aged 25 to 29 and the second most common malignancy among persons 15 to 29. Having a first-degree relative (parent, sibling or child) with melanoma more than doubles the relative’s own melanoma risk. Therefore, the population of family members at elevated risk is also growing at an increasing rate,” notes Dr. Manne, who is also a professor of medicine at Rutgers Robert Wood Johnson Medical School.

As a group, young onset melanoma survivors have been identified by the NCI as a unique and growing population. They are at higher relative risk for a second malignancy than adults diagnosed with cancer over age 39. First-degree relatives of young melanoma patients are at increased risk for melanoma (Lee, J. S., et al., Cancer, 2016). It is recommended that melanoma patients and their first-degree relatives engage in regular total skin exams, comprehensive skin self-examinations, and sun protection.

“Research has shown that despite their increased risk, these first-degree relatives pay little attention to sun protection and skin surveillance behaviors. Although the vast majority of young onset melanoma patients engage in regular total skin exams, many do not engage in regular self-exams or sun protection,” adds Manne. With little intervention research targeting the unique and growing population of young onset patients and their family members, Manne’s group hopes to shed additional light on the topic.

The intervention will examine the impact of two types of private Facebook groups. One group will receive education about skin cancer and recommended sun protection, skin self-checks, and physician skin exams, along with working on improving these behaviors by setting goals and providing both group and family support. The other group will receive general health and wellness information. Nearly 600 young melanoma survivors and nearly 600 of their first-degree relatives will be randomly assigned to one of these two groups. Manne and colleagues aim to show that a closed social media platform is an effective tool to increase sun protection, skin self-checks, and physician skin exams among young skin cancer survivors and their family members. 

The award period runs through May 2023.

About Rutgers Cancer Institute of New Jersey

As New Jersey’s only National Cancer Institute-designated Comprehensive Cancer Center, Rutgers Cancer Institute, along with its partner RWJBarnabas Health, offers the most advanced cancer treatment options including bone marrow transplantation, proton therapy and CAR-T cell therapy.  Along with clinical trials and novel therapeutics such as precision medicine and immunotherapy – many of which are not widely available – patients have access to these cutting-edge therapies at Rutgers Cancer Institute of New Jersey in New Brunswick, Rutgers Cancer Institute of New Jersey at University Hospital in Newark, as well as through RWJBarnabas Health facilities.

No comment yet.

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study #esante #hcsmeufr

From hqlo.biomedcentral.com

Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and melanoma-specific HRQoL questionnaires represent these perspectives.

Methods

A survey was distributed on the social media channels of Melanoma Patient Network Europe to assess melanoma patients’ perspectives regarding HRQoL. Two researchers independently conducted content analysis to identify key themes, which were subsequently compared to questions from one current cancer-specific and two melanoma-specific HRQoL questionnaires (i.e. EORTC QLQ-C30, EORTC QLQ-MEL38, FACT-M).

Results

In total, 72 patients and 17 carers completed the survey. Patients indicated that family, having a normal life, and enjoying life were the three most important aspects of HRQoL for them. Carers indicated that being capable, having manageable adverse events, and being pain-free were the three most important aspects of HRQoL for patients. Respondents seem to find some questions from HRQoL questionnaires relevant (e.g. ‘Have you felt able to carry on with things as normal?’) and others less relevant (e.g. ‘Have you had swelling near your melanoma site?’). Additionally, wording may differ between patients and HRQoL questionnaires, whereby patients generally use a more positive tone.

Conclusions

Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences seem to emerge between patient and carer perspectives. Additionally, patient perspectives did not seem to fully correlate to questions posed in cancer- (i.e. EORTC QLQ-C30) and melanoma-specific (i.e. EORTC QLQ-MEL38, FACT-M) HRQoL questionnaires examined

No comment yet.

How Social Media Usage Affects Doctor To Patient Relationships #esante #hcsmeufr

From www.forbes.com

Social media has made a significant impact on every aspect of our lives. Healthcare is no exception. The increasing usage of social networks among both practitioners and patients has proven to cast a positive impact on the overall healthcare quality.

Specifically, social media largely contributes to how we choose our healthcare providers. According to a PricewaterhouseCoopers report, 41% of patients said that social media content impacted their choice of hospital or physician.

 

Another massive study conducted at the University of Groningen, The Netherlands, indicates that social media has even a stronger impact on doctor-patient relationships. After analyzing over 1,700 articles, researches identified that the patients' use cases of social media can be grouped into six categories:

  • Emotional
  • Informational
  • Esteem
  • Network Support
  • Social Comparison
  • Emotional Expression

Each of these use cases presents different effects on patients and, at the same time, affect their relationship with the healthcare provider in the following manner.

How Attorneys Are Helping Create An America Of We, Us, And

 

How Digital Twin Tech Helps Drive Industry

 

Social media usage leads to more equal communication between doctors and patients

Social media has become a popular tool for patients to expand their knowledge about their condition and treatment options. For example, 29% of patients peruse social media to view other patients’ experience with their disease and 42% browse social media platforms to discover health-related consumer reviews according to PwC.

Consequently, by increasing their knowledge, patients come more prepared to the consultations. They can communicate with their doctor better and know what kind of questions to ask. According to Kevin Meuret, CEO of Mantality Health, “Social media usage makes patients more inclined to actively communicate with their doctor during the medical consults in the first place. Growing conversations on social media about  ‘stigmatized’ conditions such as low testosterone levels or psoriasis send a powerful message to other sufferers and encourage their willingness to seek medical attention.”

For instance, the Psoriasis Association has launched a massive awareness campaign on Instagram, encouraging users to share images of their condition using #getyourskinout and #psoriasiscommunity. Dominic Urmston, digital communications officer at the charity, explained that “Users can find people who share similar experiences who they can chat to and support one another. Also, it empowers them so they can share images of their psoriasis and post about their experiences too”. As a result, the condition becomes less stigmatized and more people are encouraged to weigh in on various treatment options and speak about them with their healthcare providers.

Social media contributes to increased switching of doctors

On a less bright note, social media can contribute to the patient’s likelihood to change their provider multiple times. 44% of users look up information about doctors or other health professionals before scheduling a visit. Patients now pay more attention to negative reactions shared by other users. And can choose to switch doctors after participating in an online discussion with another patient. Social media reviews have had the most effect on provider choice for patients who are coping with a chronic disease, try to manage their diet or stress.

Social media helps develop more harmonious doctor-patient relationships

“Social media often empowers patients to follow physician's recommendations and stick with the proposed treatment plan, especially if they become part of a social media support group,” said James Bayliss, CEO of Vaper Empire. “This, in turn, creates less tension between the doctor and the patient during clinical interactions.”

Additionally, social media often provides patients with space to "vent" their negative emotions and frustrations with the condition, instead of doing so in front of the doctor.

However, the research further identified a missed opportunity – patients tend to rarely empower one another to seek alternative treatments if their current one doesn’t bring the results they want.

Social media content can result in suboptimal interactions between doctors and patients

Social media and online publishers have given us accesses to an enormous amount of scattered health information. Millennials, in particular, are more inclined to follow online health advice and rely on information shared by their peers, instead of scheduling necessary appointments with specialists.

“When patients bring social media content to consultation, along with their strong opinions on the matter, healthcare professionals are forced to spend time on sorting and verifying that information,” said Dali Dugan, CEO of HealthworxCBD. “As a result, they feel that their expertise is being challenged and that can impact their behavior with the patient during the session. Negative reactions from the doctor can affect the patient’s subjective well being, making them feel disempowered.”

And those professionals, who are willing to take an extra mile for their patient and look through the information, face an increased risk of making the wrong judgment by being presented incomplete or questionable data from unverified sources.

The bottom line is this: as a patient you should treat information sourced online with extra judgment. While it can be helpful to increase your overall understanding of the condition and guide you towards asking the right questions from your practitioner, it should not be treated as the ultimate source of truth or leveraged to question the doctor's expertise.

I am a writer and lifestyle entrepreneur. After working in the corporate world for over 5 years, I resigned and took to consulting entrepreneurs and companies, including Fortune 500 companies like LinkedIn and Cisco. I have particular interest in how people and businesses ha...

 MORE
Art Jones's curator insight, December 4, 2018 4:38 PM

Excerpt: The increasing use of social networks among both practitioners and patients has proven to cast a positive impact on the overall healthcare quality.

 

Specifically, social media largely contributes to how we choose our healthcare providers. According to a PricewaterhouseCoopers report, 41% of patients said that social media content impacted their choice of hospital or physician.

Winning The Social Media Game, 99% of Doctors Do It Wrong #esante #hcsmeufr

From www.youtube.com

If you have ever wondered how to make social media work for you, you are not alone. 99.9% of doctors do social media wrong! In this webinar, you will lear
No comment yet.

Stratégie digitale et réseaux sociaux : 13 tendances à surveiller en 2019 #esante #hcsmeufr 

From www.talkwalker.com

Les tendances réseaux sociaux 2019 vues et commentées par les meilleurs experts digitaux du marché
No comment yet.

Preferences and interests of diabetes social media users regarding a health promotion intervention  #esante #hcsmeufr #digitalhealth

From www.dovepress.com

Preferences and interests of diabetes social media users regarding a health-promotion intervention Elia Gabarron,1 Enrique Dorronzoro,2 Meghan Bradway,1,3 Octavio Rivera-Romero,2 Rolf Wynn,3,4 Eirik Årsand1,3 1Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway; 2Department of Electronic Technology, Universidad de Sevilla, Seville, Spain; 3Department of Clinical Medicine, Faculty of Health Sciences, UiT – Arctic University of Norway, Tromsø, Norway; 4Division of Mental Health and Addictions, University Hospital of North Norway, Tromsø, Norway Background: Nowadays, rapid and accessible participatory research on diabetes can be carried out using social media platforms. The objective of this study was to identify preferences and interests of diabetic social media users regarding a health-promotion intervention targeting them. Methods: Social media followers of the Norwegian Diabetes Association were invited to participate in the creation of a health-promotion intervention on diabetes by expressing their opinions through an online questionnaire posted on Facebook, Twitter, and Instagram. The questionnaire asked participants about their demographics and preferences regarding type of health content: format, frequency, and channels to deliver content. Questions regarding the perceived quality of diabetes-related information and satisfaction with content on social media were also included. Results: The questionnaire was answered by 346 participants: 332 (96%) of those were reached via Facebook, 66.5% of respondents (n=230) identified themselves as women, 54% (n=187) as individuals diagnosed with type 1 diabetes, and 71% (n=235) were aged 30–64 years. The preferred type of content was “research and innovation on diabetes”, selected by 78.0% of the respondents. “Text format” was the choice for 93.4%, and 97.3% would prefer to find health-promotion content on Facebook. There was heterogeneity in the desired frequency of this content. In a scale ranging from 0 to 100, the perceived quality of diabetes-related information on social media was 62.0±1.2 and satisfaction with such content 61.9±1.3. Conclusion: The approach used in this study was successful in reaching and involving participants quickly, and could also potentially increase diabetes patients’ engagement and satisfaction with health-promotion interventions, enhance their sense of community, and thus help people attain healthier lifestyles. It is a limitation that our sample might not have been fully representative, as the most interested social media users might have chosen to participate. Keywords: community-based participatory research, diabetes, health promotion, health education, social media
No comment yet.

Protecting the Value of Medical Science in the Age of Social Media and “Fake News”  #esante #hcsmeufr

From jamanetwork.com

New threats to effective scientific communication make it more difficult to separate science from science fiction. Patients can be harmed by misinformation or by misplaced trust; for example, patients with cancer using complementary medicine are more likely than patients not using it to refuse evidence-based therapies and have higher mortality.1 Researchers who produce objective science can no longer focus on simply disseminating the message. Now they must also defend that evidence from challenges to the validity and interpretation of their research and, at times, be proactive to ensure that unsubstantiated messages do not compete with the correct message. For instance, the unfounded, and yet persistent, beliefs linking autism with vaccination demonstrates both the health dangers of misinformation and the effort required to counteract that misinformation. The adversarial stance seems destined to decrease trust in the scientific enterprise, but the alternatives seem worse.

 
Contributing Factors

Three related factors contribute to current circumstances. One is the rapid decrease in the cost of publishing information. When getting information to the public was expensive, communication could come only from governments or highly resourced private interests. Communication also came from publishing houses that developed editorial processes to protect the value of their capital investments. These organizations could communicate correct or incorrect information as they saw fit, but there were fewer of them, and they were typically identifiable, which made their biases easier to understand. Now, anyone can Tweet or post on Facebook. Social media is indeed democratizing, but its novel dynamics allow strategic content to infiltrate trusted social networks, posing and propagating as influential commentary.

Second is the increasing ability to select what information is heard. When the public was restricted to the local newspaper or radio station, everyone heard the same thing. The powerful urge to favor information that confirms prior views paired with a new ability to filter out the alternative creates the echo chamber of contemporary media. Twitter accounts presumed to be bots have generated positive online sentiment about the use of e-cigarettes.2 Clinicians and scientists are also vulnerable, with the increased ability to selectively expose themselves to confirming evidence.

Third, and more recently, is that the ubiquity of misinformation has created a tool to perpetuate it. Opponents of the content of a report or a message need only decry it as “fake news” to invoke a conspiracy against that content. This single phrase almost seems to initiate an anamnestic response among those disinclined to accept or believe the content, automating cascades of disbelief and dismissal. Misinformation has no constraints and can be strategically designed for spread. For instance, false information about the Zika pandemic had greater uptake than accurate posts.3

Social media has created an unprecedented ability to spread sentiment and exert influence. Individuals exposed to fewer positive expressions on social media are then more likely to post fewer positive expressions on social media.4 The world has been alarmed at revelations of the politically motivated release of misinformation through social media channels and the reach that information has achieved. Science and health are just as vulnerable to strategic manipulation.

Countermeasures

How can scientists and institutions that communicate scientific information anticipate and respond to these threats to their value? What countermeasures can they deploy?

Provenance

When accounts surfaced about the use of Facebook to influence political thought, the evidence was largely from 2 avenues: either by revealing the identity and motives of groups who have used these media strategically or by revealing the provenance of specific messages that have propagated through it. The ability to credit information from scientific journals, and, in turn, to discredit information without such sources, is perhaps the most conventional countermeasure to misinformation. Information from journals usually comes with explicit identification of sources and their conflicts of interest, and is curated through peer review.

Although each of these steps occasionally fails, journals offer provenance structurally designed for the precise purpose of separating fiction from nonfiction and helping readers understand the difference. Because of this critical role, journals may be the ally in greatest need of support. If the peer review process did not exist, one of the first actions scientists would take to counteract misinformation would be to invent it. Thus, it is surprising that some scientists are now embracing preprint publication that eliminates many of the protections between the creation of information and its dissemination.5 Science may benefit more from strengthening the reality and perception of its review than sacrificing these factors for the sake of speed.

Engagement

Scientists engaging thoughtfully on social media is important but incomplete. Uncoordinated efforts of individual scientists cannot take on resourced interests with fleets of bots. The bot capable of reaching millions will generate more messages and activity than the researcher with 1000 followers every time. What is needed is a campaign, engaging the platforms that patients use. In some cases, fake news could be seen as a teachable moment and an opportunity for researchers to clarify scientific findings. Significant occurrences of misinformation may require stronger responses. Recently, the task has required defending good research from attack. The more aggressive stance is disabling misinformers. However, because moving down that slope puts credibility at risk, evidence-based organizations that trade most on that credibility must consider those risks.

Transparency

One element that makes misinformation so potent is that it can target those who are most receptive to the information. Precision marketing recapitulates precision medicine. When individuals share their symptoms, diet, medication usage, and medical histories, they leave enough digital residue to define a targetable persona. Facebook posts can be used to predict a diagnosis of depression.6 Because there is an increased focus in research to return findings to patients,7 there could also be a concerted focus to assist patient access to the information underlying these personas and how those personas may distort their world view.

Narrative

Evocative stories are typically far more emotionally persuasive than multiple tables reporting systematic findings. In experimental settings, participants randomized to read about a person who is experiencing poverty donated more money than those randomized to read ostensibly more systematic and objective statistics reflecting the broad extent of that poverty; however, more concerning is that participants randomized to read both donated an amount intermediate to the other 2 groups.8 Evocative anecdotes are not necessarily more emotionally persuasive than systematic data, but instead data often weaken emotional appeal rather than strengthen it.

Reputation

Social media is leaving peer-reviewed communication behind as some scientists begin to worry less about their citation index (which takes years to develop) and more about their Twitter response (measurable in hours). Science is not supposed to be a popularity contest and yet humans delight in competitive rankings. Published college rankings have used more dimensionalized criteria to unseat what are, literally, old schools. At the same time, the organizations that produce such rankings may have merely substituted their own metrics to elevate themselves rather than the cause of higher education. Some journals now link to aggregators like Altmetric, which report Tweets about articles with the immediacy of stock tickers. The appeal is irresistible: Altmetric ratings deliver fame in 15-minute doses. Like the college rankings, these alternative metrics broaden the understanding of the value of a scientific contribution. One approach is to develop additional indices that offer immediacy and yet are not so subject to flights of fancy.

Conclusion

Scientific information and misinformation are amplified through social media. As those channels become vulnerable to scientific integrity, there are opportunities to develop countermeasures and specific strategies for vigilance and response.

Back to top
Article Information

Corresponding Author: Raina M. Merchant, MD, MSHP, University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104 (raina.merchant@uphs.upenn.edu).

Published Online: November 19, 2018. doi:10.1001/jama.2018.18416

Conflict of Interest Disclosures: Dr Asch reported being a partner and part-owner of VAL Health, a behavioral economics consulting firm. No other disclosures were reported.

No comment yet.