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Doctors can tweet and Facebook... but they need to be careful - say new guidelines


The advice is contained in a new guide to professional conduct and ethics for doctors released by their regulatory body the Medical Council today.

It acknowledges how social media can be used to the good to promote healthy habits and highlight useful research.

But medics must maintain standards and ensure there is no breach of a patient-doctor relationship.

Doctors here have taken to social media with enthusiasm and frequently use the platform to criticise the state of services and under-funding.

The updated guide, launched today by Medical Council President Freddie Wood, the retired cardiac surgeon today, follows wide consultation.

Key areas deal with patient safety including:

Special emphasis on the protection and welfare of vulnerable people, such as children or someone with a physical or intellectual disability, incapable of independent living. Doctors should be alert to the possibility of abuse of vulnerable people and notify the appropriate authorities.

New “Children First” legislation is pending and we will keep a watchful eye on developments, in case our Guide requires updating.

It warns that confidentiality is at the core of the doctor/patient relationship, but the duty to protect patient confidentiality must be balanced with the duty to share information in certain exceptional circumstances, for example, where it is in the public interest.

There is also updated advice for doctors who are changing shifts and they are reminded of the need to ensure there is proper hand-over of patients  to ensure  the doctor coming on duty is fully briefed on their condition.

There have been instances of cases where this has not been done and vital information was not passed on.

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Twitter: The Future of Clinical Trial Recruitment


The views expressed in this post are mine and mine alone and do not necessarily reflect those of any of my current or past employers. I recently wrote abou
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10 Ways for Healthcare Professionals to Stay Compliant on Social Media - Small Business Blog


As part of a highly regulated industry, many healthcare organizations have been hesitant to adopt social media.
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Social Media Helps Solve Health Mystery That Doctors Couldn’t Explain


Social media helped the Bigelow family find a reason for their daughter’s mysterious health condition after years of ineffective testing.


Almost 72% of Britons Believe Quality of Health Services to Drop

Although doctors had determined through genetic testing that Tess had a mutation on a USP7 gene, they couldn't be certain whether the 6-year-old girl's symptoms, which included developmental delay, gastrointestinal problems and periodic seizures, were a result of the congenital DNA shift.

When the doctors gave up, claiming that they wouldn't be able to make a diagnosis, the child's parents shared their situation on social media, in hopes that one day they would find other people whose children have similar symptoms.

The wait wasn't long. That same evening they received a phone call from Dr. Mike Fountain at the Baylor College of Medicine in Houston, who had been studying USP7 and had found seven other people with that particular genetic mutation.

A lab colleague of Fountain's had noted Bigelow's story after a user posted it on Reddit.  

"Someone who shared the lab with Fountain saw it and said, 'Isn't this the gene you work with?' And he said, 'Yes, it is,'" Tess' father Bo Bigelow told ABC News.

Fountain explained that the mutation in the USP7 gene prevents cells from recycling proteins correctly, a necessary means to securing normal functioning of the body.

"You wind up with a neuro-developmental disorder," Bigelow explained in his blog. "You have intellectual disability and probably autism and seizures."

Tess currently has the mental capacity of an 18-month-old. Unfortunately, there is no cure for her condition, but the girl's parents are hoping for some sort of experimental treatment now that, at least, they understand the underlying cause.


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According to Bigelow, researchers at the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital have been very helpful, as well as Drs. Fountain and Christian Schaaf, assistant professor in the Department of Molecular and Human Genetics at Baylor. The child's father said that learning the reason for Tess' condition was a great relief.

The family has been able to make small changes, that help Tess with vision and skin problems. They also managed to get in contact with another family who have a child with a USP7 mutation, a connection possible through the utility of social media.

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HIPAA and Social Media: Avoiding Costly Mistakes


A nurse inspired by a young chemotherapy patient’s courage posts a photo on her personal Facebook page, being careful not to use the patient’s name. A practice manager posts a photo of an office party on Instagram; a stack of patient files is in the background. A nurse writes an angry blog post about an alleged cop-killer who is being treated at the hospital where she works, but does not name the patient, victim, or her employer. What do all of these scenarios have in common? They are all examples of HIPAA violations that led to a healthcare professional being reprimanded, fined, or fired.

You may think your practice is up to date on patient privacy, but changes in HIPAA policies, healthcare information technology, and the explosion of social media have changed the game. “Despite widespread awareness of the need to store and send sensitive patient data securely, physicians and practices run afoul of HIPAA rules on a regular basis, which opens the door to both civil and criminal penalties,” reportsMedical Economics. The maximum HIPAA fines have increased to a whopping $50,000 per violation.

Here’s what you need to know about HIPAA and protecting your patients and your practice in this age of social media and oversharing.

Decoding ‘patient identifiers’

Because there are new social media platforms emerging all the time, it can be daunting to figure out what’s OK to post and what’s not. First, you and your employees need to understand what is considered a HIPAA violation on social networks. Most healthcare professionals know to avoid impermissible use or disclosure that compromises the security or privacy of a patient’s protected health information (PHI). The confusion arises in defining what PHI is and is not.

HIPAA specifies 18 identifiers beyond a patient’s name that must be kept private. One of those is “full face photographic images and any comparable images,” which is where the nurse mentioned in the Facebook example above ran afoul of HIPAA. This even includes recognizable patient photos or files in the background of photos, such as in the office party example above. You’re not even in the clear if you’re simply reposting or “regramming” photos of a patient sharing all the details of their medical issues on their own social media accounts. If the patient can be identified, don’t do it.

It’s also important to consider things that might be “patient identifiers” besides a person’s name or face. In one case, a nurse posted a comment on a small-town newspaper’s blog that mentioned a patient’s age and mobility aids, which were enough to figure out whom she was discussing.  “In small communities especially, people can quickly determine who is in the hospital and for what with just a few details. Innocent comments about a patient lead to identification,” notes Kyna Veatch on the legal  

This also goes for celebrities and high-profile people. In the case of the nurse mentioned above who angrily shared her views about a patient online, news coverage about the murder case made it clear whom she was talking about. Another common example of HIPAA violations is when staffers cannot contain their excitement about treating a pro athlete or well-known TV personality and “overshare” on social media. “Posting verbal ‘gossip’ about a patient to unauthorized individuals, even if the name is not disclosed” can get medical practices into hot water with HIPAA, warns the company Healthcare Compliance Pros (HCP).

HIPAA do’s and don’ts

Let’s look at some best practices related to HIPAA and social media:

Do keep your and your employees’ personal social media accounts separate from the practice accounts.“Some ophthalmologists choose to create personal pages with pseudonyms that only their friends and family know,” notes Veatch. “This keeps patients from searching for them and sending friend requests.” Avoid “friending” patients on personal or practice accounts, and advise your employees to do the same.

Don’t make the mistake of thinking that posts are private or disappear once they have been deleted.Search engines and screenshots can make even deleted posts permanent. As a general rule, don’t post anything you wouldn’t be comfortable sharing in public. “If there is any doubt at all about a certain post, picture, or comment then check with your compliance officer or even a colleague before publishing,” advises HCP.

Do speak up when patients are asking for medical advice online. Crowdsourcing your medical care on social media is never a good idea, but people do it all the time. Doctors can offer advice as long as it’s general and not specific to one patient. Sharing a patient education video on a particular health topic or condition can be one way to do it. “Speaking to patients as a collective on social media should steer providers away from any privacy risks,” per physician and social media expert Kevin Pho of If an unknown patient reaches out and asks a personal health question on social media, “take that conversation offline with a standard response that asks the patient to call the office and make an appointment, or if an emergency, to call 911 or go to the emergency department,” he advises.

Don’t overlook staff training. Educating your staff and having a solid social media policy in place is imperative to HIPAA compliance, according to Healthcare IT News. Your policy should define social media, mention specific sites, and describe what information employees are allowed to post online and what is off-limits, on both the practice pages and their personal pages. As Healthcare IT News states, “When employees post on social media, not only do they represent themselves, they represent the employer, the office, and all healthcare professionals.”

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Triangulation of complaints, social media and real time patient experience qualitative data


The importance of patient experience has been increasingly recognised within the NHS and CG138 and QS15 was produced by NICE to provide NHS providers with clear guidance on the different components of a good patient experience and provided the evidence and direction for creating sustainable change to deliver an 'NHS cultural shift' towards a truly patient-centred service.

 The Trust has long recognised the importance of patient feedback about the standards of care they have received and has had a robust patient experience programme in place for many years. This programme has been recognised at a national level as an example of best practice, and uses a range of mechanisms to gather feedback from patients around both local standards and those outlined in the NICE guidance. This includes gathering real time feedback at a ward / service level. Running alongside this, the Trust has also had a robust complaints service which provides another valuable source of information about the quality of care patients have experienced. This is complimented with the feedback received via the PALS service.

 In recent years, there has also been an increasing use of social media such as Twitter and Facebook by patients to feedback both their positive and negative experiences of care. All of these sources of information provide the Trust with important information on how well the NICE guidance and quality standards for patient experience are being implemented.

 Prior to this initiative, each of the different feedback mechanisms (complaints, patient experience surveys, PALS information, and social media data) were analysed and reported on individually providing important information on the extent to which NICE standards relating to patient experience were being implemented. However, the Trust decided that there was value to be added by triangulating all of this different feedback to gather a greater insight into the ‘bigger picture’ of patient experience and the extent to which NICE standards were being met.

 We therefore brought together relevant stakeholders from across complaints, patient experience, PALS and communications along with patient governor representatives to agree the best way forward. It was agreed that this approach would help provide assurance that the NICE standards pertaining to patient experience were being most effectively captured and reviewed to identify both areas of good practice and those in need of improvement.


The project group has since evolved into a formal Patient Feedback Sub-Committee of the Board and is now chaired by a Non-Executive Director. The main challenge was to try and identify the best way of consolidating the different streams of information into a single, meaningful format that could be easily and efficiently interpreted. A range of different approaches were trialled before deciding upon the final methodology. This methodology involves theming each of the different elements of patient experience into ‘transactional’ and ‘relational’ aspects of care. Transactional aspects of care relate to the following NICE standards:


• have opportunities to discuss their health beliefs, concerns and preferences to inform their individualised care

• are supported to understand relevant treatment options, including benefits, risks and potential consequences

 • are actively involved in shared decision making and supported to make fully informed choices about investigations, treatment and care that reflect what is important to them

 • are made aware that they have the right to choose, accept or decline treatment and these decisions are respected and supported

• are made aware that they can ask for a second opinion.

• experience care that is tailored to their needs and personal preferences, taking into account their circumstances, their ability to access services and their coexisting conditions

• have their physical and psychological needs regularly assessed and addressed

• experience continuity of care delivered, whenever possible, throughout a single episode of care

• experience coordinated care with clear and accurate information exchange between relevant health and social care professionals.

Relational aspects of care encompass the following NICE standards:


• are treated with dignity, kindness, compassion, courtesy, respect, understanding and honesty

• experience effective interactions with staff who have demonstrated competency in relevant communication skills

 • are introduced to all healthcare professionals involved in their care, and are made aware of the roles and responsibilities of the members of the healthcare team.

The new process did not incur any additional costs and instead created efficiencies by merging together the different groups where patient experience and standards of care were previously considered and discussed

Results and evaluation

Overall results to date suggest that the interventions for improvement would be best focused on the transactional (systems and processes) aspects of care. Within the NICE guidance, this refers to areas such as: ensuring patients are given the right level of information, experience continuity, and have well-coordinated care.

The analysis shows that the majority of patients report a positive experience suggesting that the NICE standards are being effectively implemented. Patient experience and social media themes are also almost equally split between transactional and relational aspects of care and the majority of negative themes (79%) relate to transactional aspects of care.

The themes arising from this analysis, both in terms of relational and transactional aspects, are general/quality of care and information/communication/education are the strongest negative themes arising from complaints and PALS with the latter also a strong negative theme from patient experience data. Some of the strongest results are mirrored in both the positive and negative aspects of care.

These themes are general/quality of staff and quality/professionalism. Overall results to date suggest that the interventions for improvement would be best focused on the transactional (systems and processes) aspects of care outlined in the NICE standards. The project has delivered efficiencies in terms of how we review and manage patient feedback and has provided greater assurance that we are monitoring the implementation of NICE standards around patient experience in the most comprehensive way possible. 

Key learning points

It is important to make best use of all patient experience information you gather in order to generate a higher level picture of where efforts to improve patient experience and the implementation of the NICE guidance need to be focussed. No single method will provide all of the information needed. Careful consideration should be given to how patient feedback is themed in order to ensure consistency and accuracy in the triangulation of data.

The NICE guidance provides a useful framework for grouping types of patient feedback. Consideration should also be given as to the depth of information collected from each source (i.e. complaints, PALS, patient experience and social media information).

Initially it may be enough to triangulate at a Trust or site level, however as the process develops it will be useful to ‘drill’ down to specific wards/departments or specialties. It is therefore important that this level of detail is available from each source to really ensure that NICE patient experience standards are being fully implemented across the organisation.

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Doctors cite use of social media in teaching and learning


During the workshop on Education of the 2nd Philippine Healthcare & Social Media Summit on 21 April 2016 at the Philippine International Convention Center (PICC), speakers who were doctors themselves cited the use of social media in teaching and learning.

According to Dr. Nomar Alvia of UP Manila National Teacher Training Center for the Health Professions, maximizing social media is crucial in transmitting and constructing knowledge. Among the processes that social media can promote are feedback, interactivity, integration and reflection.

Dr. Alvia also cited that social media allows four interactivities such as with teachers, with other learners, with learning materials, and with one’s experiences. “Actually there are some teachers who use Twitter in teaching,” he added.

In using Twitter as a tool in teaching, Dr. Iris Thiele Isip-Tan of UP Medical Informatics Unit, emphasized that Twitter can be used as platform to convey credible information sources to students.

Dr. Iris Thiele Isip-Tan as she explains how Twitter can be used in classroom. 

Facebook [is] for connecting with people you went to school with, Twitter [is] for connecting with people you wish to be with,” she explained.

Citing the advantages of using Twitter in classroom, Dr. Isip-Tan said that maximizing Twitter leads to creating “real life” context for students, encouraging students to be creative by communicating with brevity and depth, and prompting self and group reflection.

Dr. Isip-Tan added that Twitter can be used for informal quizzes and polls and for setting up accounts for specific class or group.

However, she reminded the participants that setting ground rules for the use of Twitter is important. “You have to tell students that they should have full responsibility for their tweets,” she emphasized.

Aside from Twitter, the use of Tweetdeck, Pinterest, Periscope, Facebook Live, Youtube Live and Instagram were also recommended during the workshop.

The Education track is one of the six workshops conducted during the Summit. With the theme “Healthcare and Social Media: From click to brick,” the Summit brought together healthcare professionals, academe, healthcare industry, patients and advocates to forge partnerships that can help translate tweets, shares and likes to concrete action in transforming the country’s healthcare services. ■

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Patients Turn to Social Media


When you need to choose a restaurant, find a place for a good haircut or an honest car mechanic, it's likely you'll go online to check the reviews on Yelp. Lately, people have been turning to the social networking site for help choosing a hospital.

A new study from researchers at the University of Pennsylvania has found the additional information in Yelp reviews could influence patient decision-making about where to receive in-patient care. At the same time, it could provide valuable information to hospital staff and administrators.


The cost of hospital visits and insurance and billing were among the five categories most closely associated with a negative review on Yelp.

Yelp reviews of healthcare facilities provide more specifics than the federal government's survey of patients’ hospital experiences. And more people use Yelp than the government’s Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS, or H-CAPS) Survey website where results have been posted since 2008.

Almost 75 percent of U.S. Internet users reported looking online for health information in 2012 and 42 percent indicated they were seeking health-related consumer reviews on social media, according to researcher, Raina Merchant. But only six percent had heard of the HCAHPS web site. “This divergence presents an opportunity for online consumer reviews to augment and even improve formal ratings systems such as HCAHPS and increase their use in consumer decision making,” she added, in a statement.


The University of Pennsylvania team compared about 17,000 Yelp reviews of over 1300 hospitals to HCAHPS patient reviews of the same facilities. HCAHPS collects patient opinion data in 11 categories of hospital care.

The Yelp reviews included the same information in the 11 categories covered by the HCAHPS plus 12 additional categories not covered by HCAHPS: The cost of hospital visit, insurance and billing, ancillary testing, facilities, amenities, scheduling, compassion of staff, family member care, quality of nursing, quality of staff, quality of technical aspects of care and specific type of medical care.

Of these 12 extra categories, two, the cost of hospital visits and insurance and billing, were among the five categories most closely linked with a negative review on Yelp. And four of the Yelp categories associated with positive reviews — caring doctors, nurses and staff; comforting; surgery/procedure and peri-op; and labor and delivery — were not part of the HCAHPS survey.

“Topics that are covered within Yelp reviews are important because they relate to the interpersonal relationship of patients with physicians, nurses, and staff,” said Benjamin Renard, lead author on the study, in the same statement, noting that prospective patients want to know how comforting and caring the staff of various hospital departments is.


Patients’ perceptions of what matters most may change over time, according to Merchant, an assistant professor of emergency medicine at the University of Pennsylvania. Yelp reviews are written by patients for patients, and they are written in real time, “ HCAHPS may not be able to respond as agilely as social media to these kinds of changes,” she said.


The study is published online in Health Affairs.

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Journée mondiale de l'asthme : Tweeter peut aider les urgences 


En cette journée mondiale de l'asthme du 3 mai, une étude révèle l'aide que peut apporter Tweeter pour aider le personnel médical à anticiper une hausse du nombre d'asthmatiques se rendant à l'hôpital.

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Healthcare Recruitment Strategy: Get Social


Healthcare Recruitment Strategy: Get Social
April 26, 2016

This blog post is part of our ongoing TALENT TUESDAYS weekly series focused on how to improve talent management at healthcare organizations. In coming weeks we’ll feature excerpts from our Industry Perspective paper, 7 WAYS TO EASE THE PAIN OF HEALTHCARE HIRING.

It’s no secret that social media is an important tool for healthcare recruiting. A recent Harris Interactive study showed that 65% of healthcare employers plan to hire recent college graduates. Another Aberdeen Group study found that 73% of 18-34 year olds found their last job through a social network. A 2015 LinkedIn Recruiting Trends Report shows that social professional networks are the fastest-growing source of quality hires, increasing 73% over the past four years. So, if you if you are looking to hire recent grads or Millennials, you know where to find them—social media.

You probably have also realized that recruiting with social media is quite competitive and can feel like a waste of time. The key is getting beyond the job boards and connecting with your candidates where they are. Used properly, a social media recruiting strategy can be a tremendous tool for reducing your hiring costs as it allows you to target, engage, and recruit those that fit your target candidate profile.

Here are a few tips to leverage your online efforts:

  • Facebook, LinkedIn, and Twitter – Use these social networking tools to talk about employees, job openings, career fairs, and other employment related items. You can easily add a Career Section to your organization’s Facebook page and build a connection with potential candidates.
  • Align with Marketing – Chances are that your marketing department already has a social media strategy in place. Ask for help and be sure to communicate how you plan to use the various platforms for recruiting. Some of these platforms, especially LinkedIn, can have a very steep learning curve, so save some time and frustration by asking for help.
  • Be Focused – This goes back to tip #1: Define Your Target Candidate Profile. The more you know about who you are looking for, the easier it will be to find them. Social media is a maze designed to keep users engaged. Without a clear path or plan, you will easily get lost and waste lots of time in the wrong areas on the wrong people. In addition to your candidate profile, you will want to identify common professional groups (LinkedIn, Facebook), hashtags (Twitter), or related community/association sites (ASHHRA) where you want to be active.
  • Be Active – Common feedback we hear is that social media doesn’t work for hospitals. A frequent response we receive is, “We’re online but nothing really comes from it.” The most important part of social media recruiting is being active. Being active does not mean being logged in or being a fly on the wall in a group discussion, it means being actively engaged. Create conversations, ask good questions, and share great content. It is called social networking for a reason, so conduct yourself online just as you would at a public networking event and you will see better results.
  • Be Consistent – A lack of consistency when using social media usually results in ineffective efforts. It is easy to be active for a day or a week or when you are actively hiring, but consistent exposure is key. Social media becomes a place for you to extend your employer brand and begin building your own community. It does not take a lot of time; in most cases less than 20-30 minutes a day is all that you need to maintain a consistent profile. Use tools like Hootsuite or TweetDeck to automate some of your consistent content sharing, and be sure to watch the ratio of content vs. promotion. Consistency is great, but be sure that 80% or more of your posts are adding value to your audience and that you are not just posting job announcements.

Keep in mind that social media is another “hook in the water.” It’s a very inexpensive way to leverage your employer brand and connect with your target candidates. However, it is more of a passive recruiting strategy, so set your expectations accordingly. It’s a great way to enhance your online job boards and direct recruiting, but it takes focus, activity, and consistency to reveal results.  

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Facebook, Twitter Helping Boston Institutes Enroll Metastatic Breast Cancer Patients Across US


Researchers at the Broad Institute and Dana-Farber Cancer Institute are using social media and patient advocacy groups to connect directly with metastatic breast cancer patients around the country and study what makes them genetically unique.

Within the Metastatic Breast Cancer Project, researchers are using Facebook, Twitter, and patients' own online networks to cast a wide net, enroll a diverse cohort, and investigate the genomic characteristics of "outliers" — those who have had extraordinary responses to cancer therapies and those who are traditionally underrepresented in research.

Although genomic advances have led to the discovery of new, molecularly defined treatment strategies in cancer and to the development of a number of precision drugs, the genetic markers of interest are often rare, showing up in as few as 1 percent of patients.

For example, Pfizer in 2011 received regulatory approval for Xalkori as a treatment for the 5 percent of non-small cell lung cancer patients who have ALK rearrangements. Four-and-a-half years later, Pfizer received approval for Xalkori in NSCLC patients with ROS1 rearrangements based on data from 50 people — an impressive number when one considers that the marker characterizes 1 percent of tumors.

Given the rarity of druggable markers in cancer, researchers are taking to social media to broaden their search. "It's really hard to find patients with any particular phenotype that you might be interested in if you're only looking at a single institution or city," Nikhil Wagle, assistant professor of medicine at Dana-Farber Cancer Institute, told GenomeWeb. Wagle and his colleagues wanted to figure out ways to identify patients with the genomic and phenotypic characteristics that could help them answer the research questions they were investigating, without having to wait for them to walk into their institutions.

An oft-cited statistic is that around 85 percent of cancer patients receive care at community hospitals, which places the research and investigational approaches at major cancer centers out of their reach. "So, the vast majority of adults with cancer have not had their tissue studied. The tissue in pathology departments is used for clinical purposes, but then they get stored," Wagle said. "No one has really ever asked those patients if they would be willing to have their tumor studied."

The historically low clinical trials participation rate — around 5 percent — among adult cancer patients in the US was another motivating factor for the project. "That's an incredibly low number, and even among those patients, not everyone on the trial gets their tissue biopsied for study," Wagle noted.

His team decided to test out whether by using social media they'd have more luck enrolling patients into the Metastatic Breast Cancer Project. There is no cure for metastatic breast cancer, but the patients are engaged and connected. Importantly, there is a strong network of advocates supporting patients.

Half a year before the project launched in October 2015, Wagle's team partnered with advocacy groups and patients with a strong presence on Twitter and Facebook, as well as individuals who write blogs, newsletters, and have extensive email lists. The project now has its own Twitter hastag (#mbcproject) and Facebook page. The study investigators, including Wagle, are active on social media to get the word out.

"Where we have seen the most traction is when other patients put something on their own Facebook pages and Twitter feeds," Wagle said. "This has started to spread even more organically as a patient-driven movement over the last several months." 

Patients interested in joining the Metastatic Breast Cancer Project fill out an online form and provide information about their cancer. They also give consent allowing Broad and Dana-Farber researchers to contact healthcare providers to gain access to their medical records, including previous lab and genetic test results, and any stored tumor samples.

Participants also receive a spit kit in the mail so they can provide a saliva sample and researchers can compare their tumor genomics to their "normal" genomic data. Investigators at the Broad will perform deep exome sequencing and RNA sequencing on tumor samples, and standard exome sequencing on saliva samples.

Sending spit kits to study participants' homes is becoming a popular strategy in genomics research. 23andMe ispiloting such a service as an easy way help researchers incorporate genomic data in their investigations. One of the largest autism studies launched last week is similarly allowing participants to sign up online, and is mailing spit kits to their homes as a way to lessen the burden of participating in research.

In the first six months that the Metastatic Breast Cancer Project has been open, 1,800 men and women from all 50 US states, and even some from other countries, have signed up. More than 95 percent of patients have completed an online survey, answering questions about their metastatic cancer diagnosis, the treatments they received, how they did on treatment, and demographics.

More than 1,000 people have given researchers consent to collect their medical information and leftover tumor samples. More than 200 participants have mailed their saliva kits back to the project, and researchers are just starting to sequence patients' tumor tissue.

So, far Wagle's team has procured tissue and medical records for dozens of patients. He noted there have been a few cases where the tumor tissue was already used up, or the sample was more than a decade old and no longer stored at the institution.

Collecting information this way, Wagle and his colleagues want to explore the genomic characteristics of extraordinary responders. The National Cancer Institute is also studying these types of patients and defines extraordinary responders as patients who've had a complete or durable partial response to treatment in studies where less than 10 percent of participants responded.

Extraordinary responders have been a research interest at Dana-Farber for some time. Two years ago, a Dana-Farber-led team performed whole-exome sequencing on a bladder cancer patient's tumor DNA and pinpointed two concurrent mTOR mutations as likely responsible for the patient's 14-month complete response on the combination of Novartis' Afinitor (everolimus) and GlaxoSmithKline's Votrient (pazopanib). Four other bladder cancer patients in the same study had stable disease for four to five months. The two mutations identified in the extraordinary responder hadn't previously been reported in human cancer, the study authors said at the time.

Within the 1,800 patients who have signed up for the Metastatic Breast Cancer Project, Wagle's team has already identified a few patients who report impressive responses to the chemotherapy capecitabine. "We don’t have a biomarker for capecitabine, or [know the] reason why a small group of patients have extraordinary responses to that drug," he said.

Another group has shown extremely good outcomes on platinum chemotherapy. "We suspect based on other data that people who have DNA damage deficiency in their tumors might be particularly responsive to platinum chemotherapy," Wagle said. "But maybe there are other genes beyond BRCA1 and BRCA2 that might be mutated in the cancers and we should be able to discover those."

Wagle and his colleagues hope to focus on understudied metastatic breast cancer subgroups, such as women younger than 30 or 40 years old. It's not common for younger women to get metastatic breast cancer, but when they do, they tend to have a particularly aggressive form of the disease. Similarly, researchers hope to learn more about the 5 percent to 10 percent of patients who have metastatic or stage IV breast cancer from the outset.

"We're also particularly interested in using this approach to reach out to communities of patients who have been underrepresented in prior genomic studies, in particular minorities," Wagle said. "It's a real priority for us to be able to understand the underlying genomics of African-American and Latino women's metastatic breast cancer and really try to make the study representative of all the people who get [this disease]."

The Metastatic Breast Cancer Project is being internally funded at the moment, and investigators are still figuring out budgetary needs. There is no target enrollment goal, though Wagle hopes that several thousand patients will join in the first few years. In the coming months, Wagle's group will use social media to enroll patients into other projects focused on rare cancers, such as angiosarcoma, which affects the inner lining of blood vessels.

"Now this infrastructure and network we're building is about patients sharing their data and samples in order to help accelerate research," he said. "But once we build the infrastructure and once this process is in place, a great next step could be to help patients enroll in clinical trials or help identify the right therapies for them. That's certainly something we're thinking about."

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Patient Confidentiality and the Social Network


Presentation at symposium of the Philippine Pediatric Society Annual Convention, 4 April 2016. Philippine International Convention Center.
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Did social media adverse event reporting just get a little easier for Life Sciences companies?


er since social media channels such as Facebook and Twitter launched, both pharmaceutical and life sciences companies have been discussing the adverse event reporting (AE reporting) challenge. The ‘challenge’ here is simply ensuring you have a clear and manageable process in place to capture and report any social posts reporting adverse reactions to drugs or medical devices in a timely fashion.

A new tool launched from IMS Health in collaboration with Hootsuite may provide some companies with the support they need to more confidently address this need.

The Social Media Imperative in Healthcare

Today it is essential to have a strong social media presence in order for any company to be both accessible and relevant to their audience. 80% of people reach for their smartphone within 15 minutes of waking up in the morning. Most of those head for social channels like Facebook and Twitter. Throughout the day people are getting their ‘social’ fix whenever they can. This includes when on the toilet for around 40% of us. Shudder.

Around one third of people use social media for health information and support. Those dedicated to healthcare solutions and services have a responsibility to be present on such engrained channels in order to provide reliable and relevant information to those who need it.

(For useful links on social media in healthcare/pharma – see the end of this article)

The Adverse Event Reporting Challenge for Pharma/Life Sciences Companies

In the past AE reporting was a real barrier to pharma companies engaging on social media. There was a pervasive fear that something would be ‘missed’ or, more so, that the internal team would be overwhelmed with the deluge of reports unearthed through social media monitoring.

Some media AE reporting facts
  • Various pieces of research (and my own personal experience across many social media marketing initiatives) reveal that only approximately 1% of all social media posts meet the FDA requirements for AE reporting.
  • 73% of consumers use social media to search for educational information on their health condition but not to discuss it – so this low volume of AE posts make sense.
  • If you are managing a social media campaign, whether you may receive 1 message containing an AE or 1001, you need to have a solid process in place to meet legal and regulatory requirements.

In recent years most companies in the pharma and life sciences sector embraced social media channels to some extent in their digital marketing strategies. However people are always on the lookout for new tools to simplify the process and reduce workload on internal teams.

Have Hootsuite and IMS Health come up with a useful solution?

With over twelve million users, Hootsuite’s social media platform is intuitive and a daily go-to tool for most managing social media channels. On March 17th, IMS Health announced it has released an AE reporting tool that integrates directly with Hootsuite (one of over 150 tools Hootsuite has as add-ons to the platform).

This is the first Hootsuite integration specifically supporting pharma and life sciences companies and a first in the market. The simplicity here is what’s attractive. For someone who already uses Hootsuite, you get a tailored stream in your dashboard for potential AE posts.

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Social Media in Clinical Research 101215


The heart and science of medicine. Using Social Media to Attract Study Participants Alexandra Tursi, Social Media Strategist alexandra.…
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Hospitals' social media efforts boost reputation, patient loyalty: study


Hospitals are putting more and more energy and resources into growing their social media presence, but do those efforts bear fruit when it comes to reputation and patient loyalty? New research says yes.
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Bias in Social Media: A Warning Against Crowdsourcing Your Medical Care


Whether big questions or small, medically related or otherwise, social media users love to take their ponderings and perplexities to their friends to gather advice. Certainly, social media is a great place to poll opinions about the latest movie or book, and some might find asking friends for medical advice online easier than going to the doctor. Some might even feel that this collective problem-solving protects them if they believe physicians’ or health care providers’ financial motivations might preclude sound medical advice. But asking people outside the medical community for health advice carries its own set of risks.

It’s natural to assume family, friends, and Candy Crush competitors would offer medical advice purely out of the goodness of their hearts. But their own life experiences can color this advice and may not be in the patient’s best interest. For example, the patient asking about solving a high cholesterol problem with diet and exercise instead of pharmaceutical treatment might win encouragement from his Facebook friends. He may hear about someone’s terrible side effects while on a cholesterol-lowering medication. These comments will certainly lead him to believe that he is better off without medication, but is he really making a well-informed decision?

In asking friends if he should forgo this medication, the patient likely would not offer the full picture including his medical history. Readers of this man’s status update might assume his doctor is a bully who has never given him a chance to make some lifestyle changes. The 140 character-or-less blurb omits months or even years of ongoing dialogue between patient and physician. Perhaps during the patient’s prior three visits his doctor suggested diet and exercise (most physicians would), but the patient continued to gain weight, making medication the next most appropriate step. The patient is probably unlikely to share this with his online community.

Similarly, the patient’s friends might withhold their own unflattering, socially unacceptable, or simply poor medical experiences. For example, friends who suffered a stroke or heart attack after refusing medication or failing to make lifestyle changes might not admit that on social media. Likewise, the woman who questions taking antibiotics before her baby’s birth will not likely hear rebuke from someone who has lost a child to infection, as loss of a child is painful for everyone involved and typically kept private. Aside from those who turn to social media as their own personal tell-all live feed, friends online typically won’t discuss the risks of going against medical advice, because to share this information is often uncomfortable or socially inappropriate. Or some simply refuse to believe they’re wrong, despite evidence to the contrary.

On the other hand, members of the medical community are trained specialists well-versed in offering advice without bias. Evidence-based medicine is the gold standard for physicians when determining treatment options, and learning to operate within the limits of evidence-based medicine is a primary focus of medical training. Doctors are trained to distinguish appropriate medical studies from those containing bias. That’s part of our expertise on which patients rely. Most patients and friends do not benefit from that experience, so how could we expect their anecdotal “evidence” offered via social media to be accurate? Personally, I could not stand the possibility of harming my patients, either medically or emotionally, so evidence-based medicine has become my strength in offering well-supported treatment to patients.

When physicians suggest a treatment plan, there is usually a body of evidence that supports their advice. Years of education and personal concern for their patients (and possibly a touch of fear of litigation) have trained them to offer the best-supported and least-biased information they know. While friends on social media may offer opinions on medical matters, it is crucial when considering your own health to keep in mind the expertise, motivation, and bias of your source.

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Survey of use of social media for chronic disease management


Presentation of my MPH class paper on the outcomes for chronic disease management using social media interventions
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The Use of Social Media In Cardiovascular Medicine


Social Media utilization and online social networking is booming. Nearly 83 % of all Fortune 500 companies are active on Twitter and nearly 420K C-level executives engage on social media channels daily1 . For decades, cardiovascular professionals have led the way for innovation and research in healthcare and social media use and engagement should be no exception.

Our Patients Are Active in Cyberspace and That is Where They Need Us to Be…

Patients and physicians have the opportunity to engage online like never before—nearly 87  % of all American adults use the internet on a daily basis. The growing number of mobile devices and tools that are available to consumers today facilitates this widespread internet use. According to a research poll conducted by Pew2 , nearly 65 % of all Americans own a smartphone and almost 90  % own a mobile device of some type. Most users engage online daily and the internet has become a major source of information for patients. The widespread use of online resources by patients has created the concept of the “electronic patient” or e-patient. The e-patient is a healthcare consumer who is fully invested in their care—they consider themselves an equal partner with their physician in the management of their disease. They are well informed and use online resources on a regular basis. Electronic patients are changing the landscape of medical care. According to Pew, 60  % of all e-patients consume social media and nearly 30 % contribute content.

Internet use is not limited to the millennial generation—71  % of all seniors go online every single day and more than half of these seniors go online in order to access health information3 . Moreover, nearly 75 % of all patients visit the internet either immediately before or immediately after a visit to their healthcare provider in order to either seek advice or gather information to better understand a new diagnosis or treatment. Much of this online interaction is now occurring via mobile devices— enabling healthcare consumers to access information instantly, even while on the go. Social media facilitates instant communication and two-way interaction between healthcare professionals and patients. This ease of access and the opportunity for real-time dialogue and information exchange provides an enormous opportunity to impact the cardiovascular health of millions of Americans.

How Can Cardiovascular Professionals Use Social Media to Transform Care and Improve Outcomes?

Cardiovascular disease is the number one killer of Americans today. As a society we must do more to educate the public and increase awareness of the risk factors for cardiovascular disease. As healthcare providers we have a responsibility to work to prevent disease and modify risk factors within the populations whom we serve. Social Media can be an effective platform to promote wellness and positive lifestyle changes as well as a better way to interact with colleagues as well as patients in order to positively affect outcome.

A systemic review of over 98 publications concerning the use of social media in medicine was conducted in 2013 and found that there were six significant benefits when social media was used in medicine:4

  • Increased meaningful interactions with colleagues
  • More available, tailored, and shared information
  • Increased accessibility and widening access to health information
  • Increased peer/emotional/social support
  • Public health surveillance
  • Potential to influence healthcare policy

I believe that each of these findings is certainly relevant and easily applicable to the prevention and treatment of cardiovascular disease. By increasing our opportunities for meaningful interactions with colleagues, we are more likely to share ideas and innovate. Innovations will provide better treatments and will have the potential to reduce morbidity and mortality related to cardiovascular disease worldwide. Clinical trials can be promoted via social media and potential subjects can be recruited via online platforms. Social media engagement can promote collaborations in research as well as in patient care, ultimately improving outcomes. Providing wider access to health information allows patients all over the world to learn more about their risk for heart disease and may very well motivate them to make necessary lifestyle changes such as smoking cessation, weight loss and increasing physical activity. Given that the majority of Americans now have access to the internet, online depositories of information have the potential to impact millions of people with a wide range of medical problems. Even patients who live in relatively rural areas have the opportunity to learn and engage from an online platform rather than remain isolated from major medical innovations. Social media promotes camaraderie because patients have common, shared experiences. Patients with cardiovascular disease often struggle with the day-to-day challenges of living with a chronic disease and many feel lonely and isolated—often depressed and hopeless. Social media can provide patients with much needed support and the virtual peer-to-peer interaction may very well improve compliance and reduce disease related emotional stress and depression. Given that cardiovascular disease is the leading cause of death in the US today, social media can be a great way to track disease and identify patterns in order to better focus on prevention. In addition, social media can help report outbreaks of disease and can assist government officials in disseminating important information during a health crisis.

Primarily for medical professionals, social media provides a platform where physicians can work to influence public opinion and potentially lawmakers for policy change. Blogs—short essays of between 750 and 1000 words that are posted online—offer cardiovascular healthcare providers the opportunity to advocate for patients, discuss healthcare policy, and spur debate among legislators and other political leaders. These discussions can be the vehicle by which changes are made that improve healthcare and outcomes for all patients. In addition, physician involvement in online platforms serves to develop one’s reputation as a key opinion leader in a particular discipline or area of expertise.

However, even the most innovative and respected senior physicians have been slow to adapt social media for professional use. This is not the case with emerging healthcare professionals—the newer generation of physicians has been quick to adopt mobile technology and is making great progress in social media use. Data obtained from a survey in the Journal of General Internal Medicine in 2011 shows that while there is far less engagement online by older physicians, there is significant use of social media by fellows, residents and medical students5 . Nearly 95 % of emerging physicians report daily social media engagement—this is worth noting as these medical professionals will be the physician leaders of tomorrow and will likely set the standard for physician practices on social media platforms.

Social Media Provides Physicians With an Opportunity for Real Impact—Right Now

Patients trust their doctors, due in large part to the development of a meaningful doctor-patient relationship, but also due to a physician’s excellent care, years of training, and reputation as an expert. Trust between doctor and patient is critical—each holds one another accountable and both are engaged in the patient’s treatment plan and invested in the patient’s outcome. This important patient trust also extends to cyberspace.

A recent survey carryied out by PricewaterhouseCoopers demonstrated that most healthcare consumers are much more likely to trust online information provided by physicians as compared to hospitals, insurers, or drug companies.6 The online credibility of physicians offers a powerful opportunity to educate and influence. Physicians have an obligation to engage patients and colleagues in an online environment. In order to maximize the potential of social media in medicine we must improve cardiovascular outcomes. In order to successfully develop an online presence, it is important to understand how to master the meaningful use of social media in cardiovascular care:

  • To treat—engaging directly with patients about a particular disease process, treatment options, and cardiovascular care. The information should be provided generally and not specific to a particular patient. Avoid engaging in an online doctor-patient relationship.
  • To teach - provide timely and credible information and disease-speicific education to patients as well as colleagues.
  • To consult—share medical information and disease-specific knowledge with colleagues around the world. Develop a network to engage with colleagues and discuss best practices.
  • To market—share your expertise and abilities with the world. Highlight your skill set and those of your colleagues.
  • Become a key opinion leader—establish a national/international reputation. Become a thought leader and influence policy and practice guidelines.

Social media use by patients for health care and disease management is at an all-time high. The numbers of electronic patients continues to grow. While physicians have been slow to wade in to the waters of cyberspace, we are beginning to see more provider engagement. It is clear that the physicians of tomorrow will be fluent with multiple social media channels and it is apparent that older healthcare providers must begin to embrace change and engage with patients in cyberspace in order to meet the healthcare needs of a new tech savvy population. The time to get involved is now. Remember, cyberspace is where our patients are now and where we need to be.

  1. Source:, MediaBistro October–December 2013
  3. Pew Research Center’s Internet & American Life Project
  4. Moorhead SA, Hazlett DE, Harrison L, et al. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res 2013 Apr 23;15:e85. doi: 10.2196/jmir.1933. PMID: 23615206 PMCID: PMC3636326.
  5. Bosslet GT, Torke AM, Hickman SE, et al. The patient-doctor relationship and online social networks: results of a national survey. J Gen Intern Med 2011 Oct;26:1168–74. Epub 2011 Jun 25. doi: 10.1007/s11606-011-1761-2. PMID: 21706268 PMCID: PMC3181288.
  6. Source: PwC HRI Social Media Consumer Survey, 2012
Tiara Holt's curator insight, April 11, 10:13 AM

This article explains how social media can play a major part in supporting those with cardiovascular disease as well as educating the public and spreading awareness.

Takeda Oncology uses Twitter to raise awareness


KEY TAKEAWAY: While most pharma companies are staying on the sideline when it come to social media Takeda Oncology is using Twitter to raise awareness around Multiple Myeloma.
Pharma Guy's curator insight, April 7, 9:01 AM

Also read: "Boehringer Ingelheim Uses Twitter #COUGH Hashtag to Promote World COPD Day"; 

(Infographie) Les réseaux sociaux et leurs audiences respectives


Voici un petit guide pratique concernant l'audience des réseaux sociaux à garder sous la main.
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