Seeking HCSM examples, like disease surveillance, peer education

Posted by Tammy Tilley @tammytilley, Jan 12, 2012

I’m pulling together examples of how health care providers and researchers are using social media in their work. I’m less interested in ‘Dr. X blogs’ and more interested in examples like:

* disease surveillance (e.g., Johns Hopkins researchers using Twitter to track health trends)
* peer to peer education (e.g., Henry Ford hospital tweeting a live procedure)
* patient education
* clinical trials
* any other examples that come to mind

I’d love a range of ‘who’ is doing it to, institutions to someone in private practice, research to education to care, doctors or other providers, etc.

This is my first time starting a topic, and while I didn’t see another topic like this, if it’s already been ‘asked and answered’, I’d appreciate a point in the right direction. Thanks!

Hi Tammy. PatientsLikeMe has been doing some interesting data-mining of its condition-specific groups, to draw correlations and illustrate them.

The Susan Love Research Foundation created Army of Women ( http://www.armyofwomen.org ) in part to create better matches between researchers of breast cancer and the community of women. Currently 362,000+ members. Very social organizing the researcher-participant match process. The Patient-Centered Outcome Research Institute (PCORI) of the Comparative Effectiveness Research program is very interested in patient engagement like this.

I have found that institutional adoption of social media on the research side very under-developed so far. Although collegial cooperation is important, the paper and review methods most familiar to the community still appear to prevail. (This is very anecdotal on my part.)

I think entities outside the normal infrastructure, such as Patients LikeMe and The Love Foundation, who are dealing directly with people, will more easily and quickly adopt social media, and probably change the research paradigm as they do.

I think this is a great question. As a former researcher (molecular biology & genetics) and now exclusively medical student educator, my present efforts involve using social media 1) to inform med students of the empowerment of 21st century patients due to the internet, and 2) to directly empower patients themselves, via online discussions (Twitter mainly) and associated collaborations. An example of the latter is my personal investigation of “rheumatoid arthritis” and other autoimmune diseases via interactions with Kelly Young (@rawarrior) and her community of followers. The RA social media community centers on Kelly’s blog posts (http://rawarrior.com/), and her #Rheum hashtag and weekly tweetchats. I’ve been participating in this study for about a year and one-half, using RA and autoimmunity essentially as a model system for understanding human disease, and the pros and (mostly) cons of our current healthcare system in treating disease. I believe this has made me a rather uniquely informed medical educator, all directly resulting from the availability of social media.

Trained as a geneticist, I naturally believe that genetic approaches to autoimmune diseases will be of direct benefit to patient care, so I’m driving this point home via my interaction with Kelly Young and her RA community. Thus far, I’ve provided 3 of 5 guest posts on Kelly’s blog that address genetic approaches to RA diagnosis and treatment (two more later this year). Through interactions such as this, I’m providing relevant information to the RA patient community, while simultaneously enhancing my ability to educate our medical students based on my findings in online patient communities like RA. This type of investigation has even spearheaded a major effort to upgrade our medical school curriculum, including involving social media training of med students, and awareness and appreciation of increasing abundance of ePatients that soon will be flooding doctors’ offices. Clearly, 21st century docs must now be trained in ways 20th century docs never imagined. Fortunately, there are many docs on social media who would likely fully support this view, including but not limited to Howard Luks (@hjluks), Kent Bottles (@KentBottles), Wendy Sue Swanson (@SeattleMamaDoc), Matt Katz (@subatomicdoc), and
Mark Ryan (@RichmondDoc).

To my knowledge, a study like this has not been done before, not merely because social media is relatively new, but because the structure of 20th century academic system hierarchies fail to support it. It’s fully unclear what, if any, recognition may come from this time investment.

Bob, Thank you so much for your thoughtful and detailed reply. This is exactly the kind of example I am seeking about how someone in the medical field is using social media in their job. May I use your example in a training program we’re holding this weekend? It’s about 100 rheumatologists and health professionals (so talk about relevant!), and I want to showcase use cases of social media to broaden their thinking beyond, ‘I don’t want to read what people had for breakfast.’

If there are others who have professional examples I continue to welcome them! – Tammy

Hi Tammy, if you are on Quora, you may be able to find a Q&A on the subject. I follow a topic on “which mobile apps really improve health behavior” – http://www.quora.com/Which-mobile-apps-really-improve-health-behavior – and a number of answers discuss health apps with a proven record of success. Just another angle and source for information I thought you might want to check out! Good luck to you – would be interested to see the examples you compile.

Taylor – thank you for that example and your thoughts about adoption of social media application. The PCORI comment you mention makes me wonder if medical societies (like mine) who have registries will be interested in applying social media to further research interests. In addition, such an application could be a springboard to institutional exploration…since most society’s registries are overseen by volunteer committees, those volunteers may be apt to go back to their institution with ideas for their use.

Maya, the Quora link is great, thank you. I’ll take a look around as I had not thought of it as a source.

When I’m finished compiling my list for this weekend, I’ll post it here. I’m interested in an on-going collection of ideas, so appreciate everyone’s comments!

I’ve come up with an idea in collaboration with a pediatrician in town. We’ve developed the Twitter hashtag #RVASickCall ; each of us uses the tag to post comments about what illnesses are going around Richmond, and provide links to patient education information that people can review–both self-management tips (from Mayo Clinic, AAFP, etc) and ways to avoid illness (hand washing and such).

It hasn’t gained too much traction yet, but we’re playing with the idea.

Here’s a local blog post about the idea:


Hi Tammy – I too have been following this topic (especially in the Twitter space); below are some links to things I found interesting in the HCSM space – hope they help!

Twitter data accurately tracked Haiti cholera outbreak http://www.guardian.co.uk/global-development/2012/jan/12/haiti-twitter-tracked-cholera-outbreak

Medical innovations: Twitter epidemics VIDEO

How Twitter tracks the spread of disease in real-time http://mashable.com/2011/10/19/twitter-track-h1n1/

Researchers Tap Google, Twitter To Help Track Disease Outbreaks http://www.ihealthbeat.org/articles/2012/1/12/researchers-tap-google-twitter-to-help-track-disease-outbreaks.aspx

The Use of Twitter to Track Levels of Disease Activity and Public Concern in the U.S. during the Influenza A H1N1 Pandemic http://www.plosone.org/article/info:doi%2F10.1371%2Fjournal.pone.0019467

AstraZeneca is working with IMS Health to collect evidence on how treatments are doing outside of controlled clinical trials, real-world data and examples via a variety of tools – some social media. http://www.mmm-online.com/aiming-for-more-real-world-data-az-cozies-up-to-ims-health/article/222967/

How Could Twitter Influence Science (And Why Scientists Are on Board) http://www.forbes.com/sites/haydnshaughnessy/2012/01/15/how-could-twitter-influence-science-and-why-scientists-are-on-board/

6 Incredible Examples Of How Twitter Predicts The Future

Thanks, and yes, you are free to use my example more broadly in your interactions with colleagues. Glad to be of some help. Most of the power of social media has not yet been harnessed in ways that will do the most good. I expect that to change over the next few years, and what you’re doing is a great initiative in that direction.

Some great examples provided by others who posted here as well!


Hi Tammy – just saw this today… http://www.newswise.com/articles/america-s-first-center-to-deliver-health-care-solutions-through-social-media-and-cell-phones

America’s first Center to Deliver Health Care Solutions through Social Media and Cell Phones

Here’s a huge list of use-cases – applicable across other hcsm too.

140 Healthcare Uses of Twitter:


I can’t believe it’s been 2 years since I wrote this. Wow, time flies.

Thanks for that listing Phil – it’s tremendous.

Our session went well, and several attendees mentioned uses they’re going to explore right away. YouTube seemed of most interest to most attendees, especially for patient education and peer-to-peer education. Clinical trials work was also a topic of discussion with regards to recruiting patients, as was helping patients find reliable, unbiased information.

Time was the biggest obstacle they all talked about; second was individuals at institutions reporting restrictions on what they could or (more often) could not do. Fortunately there were a handful of attendees who could offer up their professional experiences, what worked and didn’t for them. It was a thought provoking session and we’ve been asked to continue exploring this topic with our members.

It’s new waters for most of our members, but there is excitement and a willingness to seriously explore social media. Thank you all again for your comments and the examples you shared.

I think the big challenge as we all get past the “this is all new to us” phase will be logistics/project management.

There’s just so many opportunities and ways to re-purpose the media that it’s also easy to get lost.

That’s kind of the fun to sort out. At least for me 😉

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