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Rescooped by Ruth Whittington from Social Media and Healthcare
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4 reasons why online patient communities should be embraced

4 reasons why online patient communities should be embraced | Literature reviews | Scoop.it

Online patient communities are dramatically changinghow patients engage with the healthcare community. In fact, more than 40% of patients say that information found via social media affects the way they deal with their health.

 

Blog: 5 tips for tactfully combatting negative patient reviews

 

Online patient communities have increased in popularity over the years as they provide a means for patients and their families to learn about an illness, seek support and connect with others—all outside of a doctor’s office. While online patient communities won’t replace healthcare professionals, they can be a valuable resource for people dealing with chronic health issues.

As a chief medical officer, I’ve seen firsthand how online patient communities can improve outcomes for those living with an illness, especially a chronic disease, like type 1 diabetes.

Through my work, I’ve seen four major benefits that I believe online patient communities provide:

 

1.     Education and experience

 

In addition to regular care from a physician, online patient communities can serve as a source of education. If a patient has a specific question about their diagnosis or treatment, consulting with a trusted healthcare provider is best. However, there are some questions that may best be answered by fellow patients.

 For example, in our type 1 community, we frequently see discussions online where people connect about tips such as packing insulin for a long trip or what adhesive tape they like to use to hold devices in place. These peer-to-peer discussions can be hugely beneficial to others in the community with similar questions or experiences.

 

Hearing from other patients on how they deal with day-to-day issues from a firsthand perspective can be incredibly valuable for those learning to live with their disease.

 

2.Resource/information for caregivers

 

Online patient communities can serve as an excellent resource for caregivers and family members, as well. Caregivers are often the front line of support for their loved one or patient. As advocates, caregivers require their own emotional care. Caregivers can use online patient communities to connect with others like them and to learn more about any logistical questions they may have (financial, living arrangements, legal and other advocacy concerns).

 

Blog: Why are medical bills so hard to understand?

 

Additionally, caregivers can experience their own emotional exhaustion. Being the primary caregiver for someone with a chronic health condition can take a physical and mental toll. Caregivers can turn to online patient communities for the encouragement they need to prevent emotional burnout.

3.Place for interaction

 

While face-to-face groups can be beneficial, they are only effective when someone is able to attend the meetings. Breaking across geographic and cultural barriers, online patient communities can let those living with a disease connect with others around the world. Our system, for example, provides a platform for individuals living with type 1 diabetes to engage with the larger community. On the system, patients can answer the “Question of the Day”—one question every day about life with the disease.

Our participants can answer the question from their perspective and review how others answered the question and what comments they may have contributed. Additionally, participants can join discussions in the community, pose their own questions, and participate in online research surveys, often driven by academic institutes or industry companies looking to understand more about the daily life experiences of those with type 1 diabetes.

4.Improve outcomes

 

Online patient communities can help accelerate treatment and improve outcomes. Online patient communities for diabetes, for example, aim to accelerate better treatments, therapies and research for type 1 diabetes through its network of patients, clinicians, researchers, pharmaceutical, device, education and outreach organizations all working together.

 

 

Online patient communities offer the opportunity to provide researchers with powerful real-world research data needed to understand unmet needs, design improved treatments and tools, and ultimately improve lives.

Online communities are not a substitute for real life interpersonal exchanges with healthcare providers, however, they do offer a unique experience that brings together people from all over the world. Online resources and connections of many kinds give us access to the experiences of others and a feeling of community.

For those facing the physical and lifestyle challenges of chronic health conditions I highly recommend online patient communities as an additional and valuable avenue of support.


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Rescooped by Ruth Whittington from Social Media and Healthcare
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Which drugmakers have the healthiest presence on social media?

Which drugmakers have the healthiest presence on social media? | Literature reviews | Scoop.it

Ogilvy Healthworld tracked the activity of the 20 largest global companies' Instagram, Facebook, Twitter, and YouTube channels from January to June, using audience intelligence platform Pulsar Core.

In the above graph from its report, The Social Check-up, the number of posts is measured on the x-axis. Lilly was the most prolific poster and so appears furthest to the right, dwarfing infrequent publishers Allergan, Teva Pharmaceutical Industries, and Takeda Pharmaceuticals.

See also: 8 ways for pharma to improve the way it uses Twitter

However, Lilly's posting did not always create engagement. It posted nearly twice as much as Boehringer Ingelheim and seven times as much as Novo Nordisk. These two firms scored highly on an engagement ranking calculated around likes, shares, comments, and retweets, shown on the y-axis.

The size of the dots relates to size of social media following — Johnson & Johnson has the largest.

See also: Omitting risk info in ads is top reason for FDA warning

The report says: "The rise of paid social has offered companies the ability to achieve better user response rates through highly specific content targeting. It is difficult to speculate which of the pharma companies studied were using paid social strategies. This may be one of the reasons Novo Nordisk and Boehringer Ingelheim achieved significantly higher levels of engagement compared with their competitors."

Another finding of the report is that disease awareness was the most common content theme posted by pharma firms, but their audiences actually preferred to interact with company news and CSR-related content.


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Pharma and social media: which company comes out on top?
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U.S. diabetics have worsening blood sugar control

U.S. diabetics have worsening blood sugar control | Literature reviews | Scoop.it
The number of U.S. diabetics with healthy blood sugar levels has declined in recent years, a study suggests.

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The number of diabetic Americans with healthy blood sugar levels has fallen since 2006 – what’s going on?
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Rescooped by Ruth Whittington from Social Media and Healthcare
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What is the role of social media in healthcare?

What is the role of social media in healthcare? | Literature reviews | Scoop.it

POST SUMMARY: While social media is moving quickly through the “hype” line it can serve as an important source of information from people who are researching health information online.  In the latest research update we found that people are in fact relying on social media for information, but there is a lot of “trust but verify”.  The key finding is that although patients still trust their doctors they want a better relationship with physicians and they want more face to face time.

The research, just concluded, was for a startup here in the Boston area and I have permission to share top findings.  The research consisted of qualitative (5 cities, 64 people) and quantitative (n=1,254).  Please not that quant research subjects were compensated with a Starbucks card.

Objective: Determine the extent to which online health seekers are using social media to makehealthcare decisions.

Participants: Online health seekers (gone online for health information within last 90 days and at least 4-6 times in the last year.

Key Findings:

(1) There is mistrust in the messenger when it comes to pharma health information-Although most said they have gone to a pharma product website most sites did not meet all their informational needs and the audience felt that they were trying to be “sold”.  They want to be able to see a list of competitive medications without having to research them online so that they can compare benefit/cost/side effects.

(2) People 30 or younger tended to rely on social media more for health information and connect with others to ask specific information about drug side effects, costs and dosage recommendations.  People 40+ used social media for help and support.

(3) Social media is becoming more important in filling the missing pieces for health information, more specifically others experiences especially around negative side effects.  It can both influence whether a patient fills an Rx and is compliant, but it varies by health condition.

(4) Patients want and need a “trusted source” to ask key health questions.  As some indicated “I just don’t know who to ask when I want a question answered.  I don’t have the time to spend all day searching for answers”.

(5) Very few people actually trust the information they find on social media.  For example, if someone reads about a side effect mentioned on Twitter they are most likely to “want to know more” and “how this could affect me?”.

(6) If a health website has a relationship with pharma patients are more likely to be skeptical of health information on that site.  “They’re not going to tell me the truth if they rely on a drug company for their profits”. A health site needs to be more transparent when it comes to their relationship with pharma companies.

(7) An online community is very much desired for caregivers/patients with chronic conditions and most said they would read the information posted by others, even if on pharma website.

(8) The more serious the health condition, the more time spent online researching health information.  Patients want to know “how is this going to affect the quality of MY life”.

(9) Peer to peer social media, health information is most desired, not communication from a pharma company.  However, patients were receptive to pharma posting information about updating health information, clinical trials or “in the news”.  It’s about informing them first so they don’t have to spend the time researching themselves.

In summary, social media use by patients in evolving as people evolve their use of social media. There is still a high level of mistrust of “big pharma” but there is also more trust of smaller biotech companies that are delivering new classes of drugs.



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Not exactly a literature review, but still interesting reading..

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