Oct 11, 2012

A mega wrap of the latest news on social media and health

So much is happening on the social media and health front that it’s difficult to keep up with the news. Below are details of some recent developments and a wealth of related material

Melissa Sweet — Health journalist and <a href=Croakey co-ordinator" class="author__portrait">

Melissa Sweet

Health journalist and Croakey co-ordinator

So much is happening on the social media and health front that it’s difficult to keep up with the news. Below are details of some recent developments and a wealth of related material that may be of interest (and hopefully use) to Croakey readers, covering:

  • Recent conferences
  •  Using social media to improve healthcare
  •  Enabling patient participation
  •  Shaking up health and medical education
  • Helpful resources 



Health 2.0

The Health 2.0 annual conference was held in San Francisco recently and included a panel discussing some of “the unmentionables in healthcare and technology”.

According to this account from the Reporting on Health blog, the unmentionables include social, financial and other stressors that can affect health and recovery.

The panel discussed some online and digital resources for patients, families and carers to address some of the “unmentionables”, including:

  • an app helping young women deal with sexual violence
  • a website helping users to find ways to share with a sexual partner a new sexual disease diagnosis
  • an innovative, mobile, digital advanced directive care plan
  • and a hospice care application that allows care cycles to be shared between providers who are all caring for a patient. This site allows users to have video-calls with friends, patients, and other providers.

Another report from the conference quotes a presentation from Joe Flower, a health futurist, who says that in order to deliver smart primary care, providers need to have the ability to swarm their patients ― in other words, use all of the data at their disposal to treat the ones that most need care at the time that they need it.


5th World Congress of Medicine2

This conference – covering social media, mobile apps and Web 2.0 in health, medicine and biomedical research – was recently held in Boston, with thousands more people than attended in person engaging with the proceedings online, via Twitter and other digital communication channels (next year’s conference is already being planned, for England in September).

With over 7000 tweets from the conference, the #med2 hashtag was trending globally – being among the world’s top 10 Twitter hashtags during the conference.

One of the conference organisers, Dr Gunther Eysenbach, Editor of the Journal of Medical Internet Research, says the conference embodies the principles of participatory, open and collaborative approaches in medicine.

Amongst other things, the organisers crowd-source the program and state that they value innovative ideas more than “big names” when choosing speakers.

This report from the conference details the first iMedicalApps-Medicine 2.0 mHealth Research Award, which aims to recognise the best paper on “the use of mobile or wireless technologies in the diagnosis or treatment of disease, healthcare professional communication/care coordination or clinician-directed wellness behavior modification.”

The winner was an Australian team – Morwenna Kirwan and her colleagues for their presentation titled “Randomized Controlled Trial of a Diabetes Self-Management SmartPhone App for Patients with Type 1 Diabetes”.

Kirwan is a researcher at the Institute for Health and Social Sciences Research, Central Queensland University in Rockhampton. She worked with her colleagues to assess whether the use of a freely available diabetes smartphone app Glucose Buddy combined with support from a credentialed diabetes educator improved self-management of diabetes, glycemic control and quality of life in poorly controlled patients with Type 1 diabetes.

Dr Claire McCarthy, a primary care physician and the Medical Communications Editor at Boston Children’s Hospital, blogged about her weekend at the Medicine 2.0 conference.

She writes:

“…what I saw is really the future of medicine.

Health care needs transforming. It costs way too much, for one thing.

And while we’ve made tremendous discoveries and stretched the capabilities of medicine in incredible ways, we aren’t necessarily getting healthier. And in all our discovering and stretching, in all our cool technologies and emphasis on efficiency, we risk losing the personal connections that can be so crucial. Social media can help with all of this, for two simple and important reasons.

First, social media is all about relationships. …

Relationships are crucial to health. We know that people with more and stronger social connections are more likely to be well, and happy—social media can offer that. It can give people ways to not just interact with friends and family, but meet new people.

There were lots of people at the conference talking about online support groups and the many ways they help patients, especially those with chronic disease.

Medicine itself is all about relationships. If you have good relationships with your health care providers, it helps you get better health care. In good relationships, both sides listen more, and tell more.

When you trust someone, you are more likely to follow their advice. By finding ways for providers and patients to have conversations on social media, we could strengthen and support those relationships. ..

Second, social media is all about communication. Communication helps people learn things from each other. Through support groups and other sites, patients sometimes learn things that sometimes their doctor doesn’t even know—medicine changes quickly, and nobody can keep track of everything—and doctors can learn from not just other doctors but patients, too.”

Meanwhile, it’s instructive to have a quick look at the top three conference influencers – according to the reach of their tweets.

They were:

1. Dr Ryan Madanick, who is a gastroenterologist from North Carolina, moderator of the #meded chat, blogger, and tweeter: @RyanMadanickMDWhen I last checked, he had 3,500 followers on Twitter.

After the conference, he blogged: “I got to meet some phenomenal people whom I never would have otherwise met just by staying in my silo of gastroenterology and esophageal diseases…

2. Cancer survivor “e-Patient Dave”, whose TEDx Talk “Let Patients Help” is in the top half of the most-watched TED talks of all time. @ePatientDave had 11,500 followers on Twitter at last count.


3. Gonzalo Bacigalupe, a family therapist and professor at the University of Massachussets who, amongst other things, is researching the role of healthcare virtual communities of practice and the role of social networks in supporting patients with chronic illness. @bacigalupe has more than 5,000 Twitter followers.


The unconference

Before Medicine 2.0 kicked off in Boston, there was an unconference with a much less structured format, bringing together a diverse group of people – including academics, industry experts, innovators, investors, analysts, and engaged patients.

At unconferences like HealthCampBoston, attendees set the agenda.

According to one report that I saw on You Tube, one of the questions that attendees decided to address was how different health services/hospitals can share data.

One health care communicator later blogged about the event, concluding:

“The energy and enthusiasm radiating from HealthCamp participants left me feeling both excited and encouraged that we’re truly on the forefront of change in healthcare.”


MedX at Stanford

MedX is billed as “a catalyst for new ideas about the future of medicine and health care. The initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health.”

This article gives the gist of a presentation by Dr Bryan Vartabedian, a pediatric gastroenterologist at Texas Children’s Hospital/Baylor College of Medicine, who describes himself as someone who was trained as an analog physician but is excited to be witnessing medicine’s digital transformation.

The article is worth reading in full. Amongst other things, he argues that doctors need to learn new literacy skills, now that they are working in an age where physicians no longer control information, there is information overload, and new opportunities are arising. He says:

“Like it or not, we’re no longer alone in this, both in learning and treating.  We need to learn to see ourselves as part of a broader network of collective knowledge.”

Another report on the conference comes from @kevinclauson, an academic focused on consumer health informatics from a pharmacy perspective.

It’s a sign of the shifting times that a journalist like me relies upon these informed citizen reporters to tell me (and my audiences) what is going on at such events.


How to tweet from conferences

Meanwhile, The Guardian recently published some useful advice on how to tweet from academic conferences. The author Ernesto Priego, a freelance researcher affiliated with the UCL Centre for Digital Humanities, who tweets as @ernestopriego writes:

“As social media usage becomes a common feature at conferences, anxieties about authority, control, attribution, originality and privacy are likely to haunt the theory and practice of scholarly social media use for some time to come. But embracing openness and transparency, through Twitter or blogging, can coexist with the existing expectations for academic rigor, ethics and civil behaviour.

Academics who are comfortable with and enthusiastic about social media need to communicate that live-tweeting at conferences is not a threat to scholarly activity but the contrary: an ally.”

And here are some tips for making your conference presentations Twitter-friendly – including having your Twitter handle on every slide.



Improving quality and safety

Recently the NHS Institute for Innovation and Improvement held a series of webinars to help NHS leaders and staff get their heads around the huge potential that social media offers them.

As the blurb says: “These sessions aimed to inspire and help health care workers to harness the power of social media to inform the public, interact and engage with your staff, healthcare professionals and other organisations, to add a human dimension to the messages you want to send out about the organisation. Imagine the transformative change that can be achieved through the enhanced connections and shared learning that social media can deliver.”

One of the organisations featured at the NHS seminar was the British Columbia Patient Safety and Quality Council, which has been at the forefront of using social media to improve quality and safety of care – for example, by soliciting feedback from patients about their care.

This website also illustrates one of the major characteristics of the digital revolution: the incredible generosity and sharing that occurs online.

In the old days, it might have cost a fortune to attend a seminar run by the world’s experts.

These days, not only do they make the seminar freely available online – they share it across multiple formats, and solicit feedback and value-adding from their audience.

For example, the site links to a SlideShare from the seminar, a transcript of the Twitter chat around the seminar, and also a Storify summary that they created of key tweets.

This page also includes a link to a guide on using Twitter that the Council created for the seminar, and that can be freely downloaded.

Meanwhile, those with an interest in healthcare improvement might like to check out this Twitter list, established by Helen Bevan of the NHS, which lists global healthcare improvers who are actively tweeting in a professional capacity.


Reaching teenagers

The NYT recently reported on how doctors are using SMS messaging to engage with teenage patients. They say teenagers find social media a faster and less embarrassing means to have questions asked and answered.

One pediatrician from Kansas City no longer gives teenagers brochures with advice on healthy living but instead a whiteboard hangs in her exam room, with hyperlinks to sites with teenager-friendly material on sexuality, alcohol and drugs. The teenagers can photograph the board with their phones, storing the information to peruse in private. Her patients read her blog and follow her on Twitter and Facebook. She follows a few of the teenagers’ blogs, commenting occasionally.

In New York, Mount Sinai Hospital’s Adolescent Health Center uses a program called Text in the City to send patients tips and reminders about medications and appointments. Patients can also text questions, understanding that answers may not arrive for 24 hours.

New Generation Health Center in San Francisco, a reproductive health clinic for adolescents, also incorporates social media into its services. If a teenager tests positive for a sexually transmitted disease, for example, and feels awkward about telling a partner, a clinician will point her to a Web site to anonymously inform partners through e-mail.

The article also cites a Pittsburgh pediatrician whose 19-member Kids Plus Pediatrics practice employs a communications director to manage an active Facebook page and the group’s Web site.


If your patients are online…

Howard Luks,  a US Orthopedic Surgeon with an appointment at New York Medical College, says clinicians should be online because that’s where their patients are. He blogs, tweets and interacts on Facebook, Google +, Pinterest and many other sites.

On a similar note, this recent article, Medicine, Morality and Health Care Social Media, by Dr Farris Timimi,  an Assistant Professor of Medicine at the Mayo Clinic College of Medicine, and Medical Director for the Mayo Clinic Center for Social Media, explores the ethical issues surrounding social media use in health care, and argues that there is an ethical imperative to harness its potential.

He writes:

“We need to engage with our patients as they walk through their journey. The opportunity to do so by participating in social media is profound, extends the reach of content in a scalable fashion, and can be executed without significant cost limitations. We must leverage the content, leverage the conversation, and leverage the good.”

Meanwhile, a growing number of health services are using You Tube to inform the community about health promotion and education messages, and also about how to negotiate health services, what to expect in consultations etc.

This medical blog has some practical advice about how to make YouTube clips for patient education.

If you doubt the power of YouTube, this clip has had more than 200 million views, making it reportedly the most viewed medical video on YouTube (if you watch it, you will see why…).



Tweeting for heart health

The eGPS site reported on this poster from from The George Institute at a recent scientific meeting of the Cardiac Society of Australia and New Zealand (CSANZ).

After analysing nine Twitter accounts, including the British Heart Foundation, European Society of Cardiology, American Heart Association and the Australian National Heart Foundation, the team concluded that: “Twitter can be used to enhance education, awareness and overall management of cardiovascular disease.”

They say:  “Specialist medical professionals need to set aside their concerns and embrace twitter and other social media platforms.”



One of the themes from the Boston conference mentioned above is that patients are often discouraged from participating in decisions about their healthcare, despite evidence that they can make valuable contributions at many levels.

One example given was how an online community of patients determined a discrepancy in the length of time it took a brand name drug to reach peak concentration compared with a generic drug.

A conference speaker said: “It was patients identifying a problem that no one else discovered, and it led to quantitative data that confirmed their experiences. It’s an example of how connecting people can identify concerns that would never show up any other way.”

On a similar note, a Washington-based endocrinologist blogged recently about why he sees patient engagement in the digital era as being positive.

He writes:

“I expect the patients to take an active role in their healthcare, in gaining knowledge about their disease, and in gaining knowledge about health prevention and treating ongoing illness issues.

In doing so, the patient becomes empowered to take an active role in the decision-making process during the testing and treatment phases of care.

I also completely agree with the definition of patient engagement as defined by the Society for Participatory Medicine. It says that patient engagement is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

In order to get patients more engaged in participating in their healthcare, I think we need to make it fun, make it interesting, and communicate using means where the patient actually is, on multiple levels of “is”.

In the case of the digitally connected patient, we should be considering communicating using the Internet, smartphones, and mobile devices such as iPads.

We need to be able to make this communication valuable to the patient so that they, in turn, want more of it, and so that the movement grows.”


Patients are crowdsourcing knowledge and data

This recent report from the online business publication Fast Company says a new breed of “ePatients” is crowdsourcing treatment databases online and using mobile technology to access and share health information.

“People are recognizing that they can and need to take an active role in managing their health instead of just sitting by and going to doctor’s appointments,” says Sean Ahrens, a leader of the ePatient movement who was diagnosed with the inflammatory condition known as Crohn’s disease at age 12. His startup, Healthy Labs, launched a site called Crohnology last year that lets people with Crohn’s and ulcerative colitis record and share treatments–including medications, dietary changes, even alternative medicine–in a structured database.


Online networks helping patients

Stead Burwell is CEO of Alliance Health and wrote about a recent study published in Academic Medicine that looked at the connection between physicians’ empathy and clinical outcomes for diabetic patients.

He suggests that online patient communities providing peer-to-peer support may be particularly helpful for people with chronic or rare diseases: “When we launched Diabetic Connect in 2008 we assumed people living with diabetes would find comfort in connecting with peers who could relate to what they were going through. We figured that people who genuinely “got it” would offer the kind of caring support and advice too-often missing in a clinical setting.”



As well as using social media for crowdsourcing expertise – whether from health professionals, patients or the wider community – there are an increasing number of fund-raising platforms with a health focus.

For example, MedStartr, based in NYC, is described as “a new way to fund healthcare projects, startups, and innovations that improve healthcare and help people live longer, better lives. We are a great way for patients, entrepreneurs, physicians, researchers, non-profits, artists, filmmakers, musicians, designers, writers, performers, and others to drive healthcare forward.”

Examples of potential projects include medical devices, apps, funds to open a clinic, drug development, academic transfer, funding improvements to services or research.

It says: “Projects we will not approve include the funding of personal care, drugs that are not in clinical trials, solutions that are not supported by clinical evidence of efficacy, projects outside healthcare, or anything that remotely looks like a scam. We can’t emphasize enough how important this last one is.”



This medical education site has suggestions for how various social media and online tools can be used to further medical education.

It cites many advantages to using social media in medical education including;

  • It is universally accessable.
  • It allows aysnchonous learning – anytime, anywhere, allowing you to integrate it into your daily life.
  • It allows resources to be used and discussion to occur outside the classroom.
  • It allows real time feedback, collaboration and global connectivity.
  • It encourages students to become creators of resources, which will develop skills needed for teaching.

BUT As with any new technology, there are always some drawbacks including concerns around: Information overload, privacy, and questions around intellectual property.

It says there is a need to teach digital professionalism and skills in medical and health education – for students and faculty.


More learning online: Webicina

On a similar theme – of the online sharing of expertise and resources – this is the online social media course, Webicina, for medical students and health professionals, established by a Hungarian academic Dr Bertalan Mesko.

After he began offering a course in social media and health in 2008, it began to get so much international interest that he developed this free, online version – Webicina.com – to make it more widely available.

The website quotes one of the course’s graduates, Dr Jill Tomlinson, a surgeon from Victoria, and Webmaster and Newsletter Editor of the Australian Federation of Medical Women.

She says she finds social media an extremely valuable and powerful tool for education, networking and communicating with people who have similar interests. One of the things she got out of doing the course was learning new tools for fostering international collaborations, and new skills in searching the web and engaging with e-patients. (And you can read more about her social media journey in this recent Croakey post).


The FOAMed revolution

Free Open Access Meducation is an online community that includes nurses, doctors, physician assistants, academics and others with this shared interest. You can join the discussion on Twitter or keep an eye on the latest news at the Life in the Fast Lane blog.

In another sign of the shifting times, one of the doctors behind the blog, Mike Cadogan, has more followers on Twitter than many publications have readers.


Reinventing lectures with Twitter

This article from OnlineUniversities.com reports on how Twitter is being used to engage students and enliven teaching:

“Without Twitter, lectures are often a one-way street, with professors lecturing for about an hour, mostly uninterrupted. It’s difficult to get students to speak up in a huge lecture format, but not so with Twitter. With Twitter in the lecture hall, more students tend to not only participate in the primary discussion with the professor, but even spin off into their own intellectual conversations with classmates. This turns the one-sided lecture into a multifaceted conversation for the class.

Thanks to Twitter, students who might be afraid to raise their hands and speak up in a large lecture hall are given a less socially intimidating way to contribute. Students who would have remained quiet can now share their ideas, explore the conversation, and become more engaged in class without feeling intimidated.

Lecturers like David Parry, a professor of emerging media at UT-Dallas, find that using Twitter in the lecture hall helps them to stay connected with students long after class time is over. As students follow professors like Parry on Twitter, they are able to further engage outside of class time, alerting them to world events, issues, and interesting articles that are relevant to class.

When it comes to review and test prep, students have historically been on their own, or, with particularly accommodating professors, enjoyed in-class review sessions or take-home sheets. But with Twitter in the lecture hall, professors can share test-prep questions to reinforce key points throughout the semester. They can even assign a hashtag to these questions so that come review time, students can go back to check them out.”


“If you are interested in leading your community you should be on Twitter”

In this blog, Dr Anne Marie Cunningham from Cardiff University has a list of ten reasons she finds Twitter useful as a medical educator.

They include: “meaningful engagement with those whose voices you might not usually hear – students, junior doctors and patients, or the wider public. For me this has been tremendously powerful.”

Another reason relates to the sharing and generosity.

For example, after she had a Twitter interaction with Atul Gawande, the prominent US writer and surgeon, he joined a Twitter-based journal discussion on surgical checklists – even though he was on holiday at the time.

While we hear a lot about the negatives of social media, the trolls and so on, what I enjoy and what it sounds like Dr Cunningham also enjoys is the tremendous sharing, participation and good will that I witness daily.

Cunningham also spoke at a recent conference of the Network Of Veterinary ICt in Education, an EU funded Project which aims to investigate the use of Web 2.0 tools such as discussion boards in informal lifelong learning. The project has led to the development of a veterinary online community, www.noviceproject.eu.


Professional development

In this interview (conducted by @carolyndv), an Irish rheumatologist Dr Ronan Kavanagh says that getting onto Twitter “is one of the best things I’ve done in my postgraduate medical education. This is largely because it has allowed me to flag up and filter research which is deemed clinically useful by my ‘Twitter’ network of colleagues around the world.”

He says:

“If you are interested in innovation in medicine you will realize that most of what is exciting is happening at the interfaces between medicine and non-medical disciplines; wireless devices, apps, social networks, crowd sourcing, patient advocacy and the electronic health record.

Having an online social media presence affords healthcare professionals a direct connection to the people at the heart of these developments, and allows their own voices to be heard in turn.”

Meanwhile, a surgeon from the University of Sydney,  @DrHenryWoorecently described how Twitter had helped him:

“This weekend I was writing a manuscript that was due weeks ago. This involved researching what had already been published on the subject and through my academic appointment at the University of Sydney, I thought that I should be able to access any article in the urological field without any problems – I had good reason to think this since I had never had any problems previously. Then for the first time ever, I needed an article from the Canadian Journal of Urology. When I searched for the journal through the on line resources of the University of Sydney library, it wasn’t there. I double checked that I did not get the name wrong and just searched ‘Canadian Journal’ and it seemed that every other specialty was covered except for the Canadian journal in the urology surgical specialty. It was Sunday and as usual, it was an article that I needed now and not tomorrow as I was keen to wrap up the section I was writing. I though that I would try putting out the problem to Twitter and to see what would happen.

In spite of negative press about the ills of social media, this has been an excellent positive outcome with the use of social media in healthcare. Crowd sourcing can work well amongst health professionals. One could argue that I could have simply have emailed these guys – I didn’t have their email addresses. The reason I used Twitter was for the fact that short messages are easy to digest and in my opinion a lot quicker to scroll through with absorption of the content than reams of emails and looking up/down the wall on Facebook and therefore more likely to catch the attention of my colleagues. I don’t have a huge number of followers on Twitter but even with less than 200 followers, a beneficial outcome was able to be achieved. As the reach Twitter continues to expand amongst those in healthcare and education, I can only see its use in this manner increasing.”

And this article crowdsourced feedback from academics about how Twitter helps them. The comments included:

There are people who are practicing what I’m researching academically and give me a reality check (@Annlytical)

Twitter is brilliant for keeping up with things, networking, finding new ideas, people’s blogs and publications (@BenGuilbaud)

meeting new people (in all disciplines), academic support, public engagement, increased visibility, filtered news (@Martin_Eve)

Twitter’s unique advantage is that very quickly allows me to spread word of my work to non-academic audiences (@elebelfiore)

Keeps me up-to-the-minute with news in my field ie; policy issues, and connects me to conferences/other academics (@DonnaBramwell)

great source of information & resources wouldn’t have found otherwise (@nicklebygirl)

Meanwhile, one researcher in NYC, Annie Feighery, a global health researcher and social entrepreneur, is crowdsourcing feedback to a draft article at her Participatory Epidemiology blog. The article is titled: Facebook is for bonding, Twitter is for bridging: Contextualizing social media as help-seeking behavior.



There is no shortage of resources (including even this toolkit for dealing with social media mishaps, from the NZ Government).

It is significant that in the UK, the Royal College of General Practitioners (RCGP) has taken a positive approach to developing its social media guide for UK doctors and other healthcare professionals.

The draft Social Media Highway Code has 10 guiding principles the RCGP hopes will encourage doctors to make greater use of social media, while at the same time ensuring they meet their professional obligations and protect their patients:

1. Be aware of the image you present online and manage this proactively

2. Recognise that the personal and professional can’t always be separated

3. Engage with the public but be cautious of giving personal advice

4. Respect the privacy of all patients, especially the vulnerable

5. Show your human side, but maintain professional boundaries

6. Contribute your expertise, insights and experience

7. Treat others with consideration, politeness and respect

8. Remember that other people may be watching you

9. Support your colleagues and intervene when necessary

10. Test out new ideas, learn from your mistakes – and have fun!

The RCGP has also set up a Facebook page for the Code and discussions about it and is running a dedicated forum on Doctors.net.uk and so far initial feedback appears positive.

And finally, if you are a social media evangelist (or heading that way) this article from the Harvard Business Review (by @awsamuel) gives some survival tips, including:

“Find a buddy. When you’re out ahead of the rest of your organization, it’s hard not too feel nuts. That’s why you need someone outside with enough distance to help you talk through your ideas, formulate a vision, and turn that into a game plan for moving your organization forward.

Recognize that you’re never done. If you’re the kind of person who told your organization five years ago that they had to get on Twitter, or ten years ago that they had to change to a content-managed website, or twenty years ago that they needed to get an internal email system, you’re always going be the kind of person who is looking around the curve to the next tech opportunity. If you’re thinking that all you need now is to get them on mobile, or get them using analytics, or get them using Salesforce, and then you’ll have them all set…well, it’s a safe bet that there will be a next thing. The curse — and the joy — of being a stranded evangelist is that you’re destined to live in the gap between what your organization is today, and what it could be tomorrow.”




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One thought on “A mega wrap of the latest news on social media and health

  1. Jill Tomlinson

    Great wrap-up Melissa!

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