Evolution of online patient communities

A conversation broke out on Twitter this morning about the evolution of online patient communities — how some people prefer to stick with older, familiar, “it just works” technologies rather than try to migrate to a new platform.

Catch up by reading this Storify.

I’d love to work on this with the health geek tribe if people want to continue the conversation in the comments on this post, where they’ll last longer and we have more space.

28 thoughts on “Evolution of online patient communities

    • And all of that happened on Facebook. Wow.

      Do you know the history of the FB groups you’re part of? Is there discussion of using different platforms? FB seems to be the default option for a lot of communities, as Compuserve once was (shout-out to the old-timers!!)

      • Yep! All our communities are all a couple of years old – and the founders know each other. I have brought up the idea of expanding to other platforms, and I think it’ll take time….and trust that the investment in time is worth it for us ( :

  1. PS – I think the challenge for leaders within our community is investing immense amounts of time to learn a new platform, when there’s not necessarily any upside for us at the moment.

    The BRCA community has been particularly exploited by data privatization. We have major trust issues because of the way we are treated by Myriad. Even after last year’s SCOTUS case overturning the patents on BRCA, our data is still a trade secret used to overcharge us for diagnostic testing and to ‘corner’ our market. This is to say that it’s complicated for us. We have learned the hard way that trust has to be earned – and not just freely handed out – with new technologies.

    • Andrea said it all: “trust has be earned”.

      This has always been our motto, first at ACOR, and now at Smart Patients. And, as has been demonstrated many times over, once the trust has been acquired, you are only 1/2 way there. Trust is hard to be acquired and can be lost in a cinch, if you make a single mistake and use the community you built in a way that is not fully transparent and honest with its members. This single factor is, IMO, the most significant in the success or failure of the community. It is what makes building great medical online communities such a complicated endeavor.

      If you look at it from a distance, you also realize It is no different than the rest of medicine. Respect, communicate & provide the appropriate tools and you’ll obtain more than just a community. You’ll be able to transform medicine, sometimes, as in the case of rare diseases or even with specific sub-types of diseases such as diabetes, profoundly, by building the essential tool for creating real patient-centered medicine.

      • Very true, Gilles! I think everything that you do sets a great example of how trust is earned.

        Many of us hope for a day when the outside world can show us that we can share our data while respecting our community. But we have a long way to go. I hope for community platforms that show us that they can give back to a commons and treat our data with dignity while empowering the community in the process….(I just wrote a post on that! http://www.bravebosom.com/we-need-a-brca-commons/)

  2. Susannah, great post and extremely relevant. There is a great deal of health-related learning going on on-line, on FB, disease-specific forums etc, I think especially among people with different chronic conditions. I always say, both when I speak for fellow patients and when I speak for healthcare professionals or policy makers, that I have learnt so much more from my fellow patients than I have from healthcare.
    I want to flag up something that most of you native English-speakers probably don’t think about: there is a language barrier here. I would guess that the majority of the people who could both benefit from and contribute to learning in the field, are not sufficiently proficient in English. Perhaps one day, we will have a true “Lingua Franca” but we’re not there yet.

    • You can always expect Sara to fill a short comment with many powerful ideas, each worth it own post!

      Let’s deal with language first. Beyond the proficiency or lack of, there are also cultural barriers. In the US we tend to treat China as a black hole, something that doesn’t exist. But the numbers from that single country are staggering. Just think that one of the many platform for doctor to doctor communication has more members than all the other platform I know that use English as the conversation language. I can only imagine that the same happens for patient communities. And we have no clue what these huge communities discuss, how they discuss it, how they view patient-to-patient interaction, how they view patient-doctor interaction, etc. I want so badly to learn about it. I hope some good research will be made available soon, in English 🙂

      • Gilles, I am glad that my point came across despite the short post (my “flavor” of Parkinson’s disease doesn’t go well with typing long texts…). I hope to be able to learn more about both the trust issues you mention above and start contributing to addressing the “language-dilemma”.

        • The language barrier can and should be addressed.

          As much as I love my mothertongue languages (Spanish and French), the world voted long ago and English is not a bad choice. It is convenient (many speakers already, world’s biggest economy) and easy enough to learn as to still reign as the working language for sharing knowledge.

          If broadband access can be deemed a universal right, and learning code is set to follow, why shouldn’t English lessons be promoted and funded worldwide? Makes sense to me at least.

  3. I’m very interested in this topic. When I started our rare disease organization a few years ago, a rich online community already existed. It had started out on a free bulletin board and had recently migrated to Facebook. The M-CM Network was started with the aim of creating a longitudinal registry, and we don’t have direct peer support functions because we don’t want to compete with this group that pre-dates us and works very well. I now think that this is sort of a happy accident, because it allows us to concentrate more of our efforts on research and let the peer support happen in a more bottom-up way which is, in my opinion, a BETTER way.

    My day job is building out web sites and occasionally online communities, so I am often thinking about 1) how an online rare disease community could be better than what facebook provides 2) what we might do when the time comes to move for whatever reason.

    The thing that burns me most about our Facebook group is that all of the information that people share is practically getting dropped into a black hole. The search on groups is so limited to the point of being almost useless. This is an enormous waste.

    A couple of things work really well about Facebook groups. One is that by default, new posts get emailed to members. If I were going to design a new system, this would be an essential feature. I’m convinced that a lack of email notifications would have a huge negative impact on participation.

    The other thing is something that I don’t think could be replicated in a dedicated system — our group members invariably friend each other. We end up not only seeing each other’s group posts (usually questions about medical issues, or sharing some achievement) but we also learn about each other’s day to day lives. From this we can get a better sense of where other kids are at developmentally and what the day to day issues are as well as how families cope with different things. I consider this level of sharing an incredible and useful gift. I suppose a dedicated system could allow members to share a Facebook profile and members may still friend each other. It’s hard to know if they in fact would – I’d be curious to know if other systems do this and what the results are like.

    This topic has come up on the Genetic Alliance email list and there were few organizations noting that a Facebook group, run by either the organization or by patients not connected to an organization, had superseded some previous communication platform. There were some concerns about controlling information in the groups that are not org-run. I find this to be a very interesting problem. I think it is a communication challenge of organizations to be a trusted source of information. If the patients are sharing poor information, then orgs need to strategize about how to make their information trusted and accessible. I don’t think that controlling the conversation is the answer.

    A last note, I belong to the facebook group for my daughter’s very specific and very rare syndrome along with other groups related to characteristics of her syndrome. I find the quality of information in the syndrome group to be much higher than in the groups where characteristics cross diagnoses. For anyone studying online communities, I’d suggest the specificity of the condition represented to be a variable. In the groups for characteristics, there seem to be a lot of undiagnosed people.

    I have encountered some specialized researcher/clinicians who have expressed a reluctance to give a diagnosis for M-CM or some related conditions because they see the condition differently than what is currently published– they either give a vague diagnosis that describes characteristics or give a diagnosis proprietary to their institution. I think this is a huge disservice to patients because it makes it impossible to connect to the valuable resource that an online patient community provides. I would encourage in this situation to give the diagnosis that they are reluctant about but explain to the patient that a lot is unknown and it should be considered provisional or it may change. I think patients can handle that kind of nuance and it doesn’t rob them of the ability to connect with other patients.

  4. When my daughter was diagnosed with Juvenile Dermatomyositis, we found Cure JM online that very day. There was a message board that I read for weeks. I think I read every single post and comment ever written. I asked questions. I felt so relieved to have found this great group. It wasn’t very active though on an ongoing basis and I was hungry for more info and connection.

    One day, someone posted about a Facebook group which I thought was a horrible idea. Why Facebook when privacy issues on FB were all over the news. But I joined anyway, I was curious. This group is incredible for many reasons.

    1. People are already there. You don’t have to pull them in. They get a notification that their friend posted a picture of their dog, and voila, they check out the JM posts.
    2. It better integrates with other social media. Many of the JM parents ended up FB friends so it crosses many more of life’s boundaries. While I wouldn’t post something non-JM on the JM groups, I now have a whole new set of people who share a common interests to interact with. We support each other this way in all of life- not just that of JM.
    3. Once people become active in it, it is hard to get them to join something else. We have another message board that is more public, but it gets little traction.
    4. It integrates well into the events piece so you can help each other with fundraisers, etc.

    There are also problems with it.

    1. Difficult to find old messages. They did finally add the search feature but still really hard to search and find specific posts or to find all posts on IVIG for example. Tags could help but I think it is kind of structural.
    2. New people like I was at diagnosis have to join a group before they can read. This might be intimidating to some as I feel we might miss people who need it most.

    Thanks for sharing such a great topic.

    • Amy, I’m thrilled to provide a forum for you to share these insights. My thoughts are zinging in a dozen directions right now, like a good break when you’re playing pool.

  5. I re-read an article from 2010 today which I think has some relevance to this conversation:

    Pandas and Lobsters: Why Google Cannot Build Social Applications

    It’s a little bit dated and inside baseball-y about the tech industry, but I like this line a lot: “Facebook is a lobster trap and your friends are the bait.”

    I remember listening to a panel of ex-smokers talking about QuitNet and how it’s important to allow off-topic conversations to bloom — people started poetry appreciation groups, for example, and it gave them a reason to come back and hang out together, not just to talk about smoking cessation. This sense of community was described as the pixie dust that kept a group together and made the intervention successful.

    Facebook is kind of a turn-key solution, a shortcut to creating that pixie dust that keeps people coming back. I can see how it would appeal to a patient group, especially one just starting out.

  6. I agree with all of the comments above. There is tremendous value to be found for patients (and all stakeholders!) in the social space. I think that what’s missing is patients & caregivers seeing the value in organizing these social conversations, and I don’t think that anyone will ever be able to tell patients about the value, we will have to show them the value. Perhaps it’s my marketing research background speaking, but the opportunity to collect and organize the incredibly valuable knowledge that patients and caregivers are sharing with one another has the potential to change the game for many living with chronic conditions and beyond. What we learn from one group could perhaps be applied to another, cross-disease learning.
    Patients want their voices heard, someone to listen to what they have to say, yet they’re terrified of the thought of someone “listening” to the conversations that they’re having inside of these closed groups on Facebook or elsewhere? Clinicians are terrified of engaging with patients socially. While there is often enormous support found in some of these patient networks, the misinformation that is being shared is often held as fact and harm rather than good ensues. There is such a huge opportunity being missed.
    I think that there is space for both social support groups and for social learning platforms. I wish that I could easily find so many of the conversations that I’ve found value in on Facebook. I also wish that there was an easy way to share the “data” that I’ve come across so that it can be researched formally. Or what I really wish is that it didn’t have to be formally researched, because if it is of value to one patient, it if can change or save one life, then it’s important enough. Sharing the value of a life-saving treatment should not be left to the chance of stumbling upon it on Google.
    Maybe patients don’t have time to think about all of the opportunity that exists for collaboration and the learning potential because they’re literally living day to day trying to make a difference – for themselves or their child or an elderly parent or friend. It seems like a risk to take, and we are maxed out on risks, especially ones that we don’t have to take.
    Places like Facebook are listening to all of our conversations anyway and kindly remind us of all the things that we didn’t know we needed in the form of highly targeted ads. What if I could get highly targeted medical advice? Suggestions from others like me and others nothing like me but who may be talking about the same things that I am? What if we, the patients, could connect the dots to cure cystic fibrosis by just continuing to talk to one another, but in a more organized way?

  7. I want to add a resource that Joe McCarthy (aka @gumption) tweeted to me.

    Here is the description of the study, lifted from the University of Michigan’s website:

    “It’s not that I don’t have problems, I’m just not putting them on Facebook”: Challenges and Opportunities in Using Online Social Networks for Health

    Mark W Newman, Debra Lauterbach, Sean A Munson, Paul Resnick, Margaret E Morris

    “To understand why and how people share health information online, we interviewed fourteen people with significant health concerns who participate in both online health communities and Facebook. Qualitative analysis of these interviews highlighted the ways that people think about with whom and how to share different types of information as they pursue social goals related to their personal health, including emotional support, motivation, accountability, and advice. Our study suggests that success in these goals depends on how well they develop their social networks and how effectively they communicate within those networks. Effective communication is made more challenging by the need to strike a balance between sharing information related to specific needs and the desire to manage self-presentation. Based on these observations, we outline a set of design opportunities for future systems to support health-oriented social interactions online, including tools to help users shape their social networks and communicate effectively within those.”

  8. I wanted to let the discussion go on for a while to get opinions about Facebook, before asking a question that has been bugging me for quite a while.

    The FB platform is clearly optimized for short, rapid communication. Many medical problem are complex enough that either asking or responding to a question requires fairly long communication, with multiple paragraphs, etc. How do we people handle this kind of communication with the clear limitations of the Facebook platform? I’m perplexed!

    • I’ve honestly never found this to be an issue at all. I’ve never hit a character limit on FB or had trouble reading other people’s posts. I have seen people using exclusively their phones for FB with a lot of resulting typos and no paragraph breaks. Those can be a little challenging to read. But that’s a device issue, not a FB issue.

  9. Different strokes for different communities. No one platform will ever satisfy everyone. A few months ago, I read about a techie-type person who suffered from depression, didn’t like any of the hundreds of depression communities he found online, and decided to create his own. With its own technology platform. Good for him!!

    However, the nature of patient support (or as we call them, self-help support) communities online is that the tens of thousands we have today are wonderful, insular places for emotional support and information. Nothing is broken in these communities, and having visited and become a member of hundreds of them over the past decade, I can say that many of them are well-run and well cared for. One size will never fit all.

    It’s a diverse world and the online world reflects that wonderful, colorful diversity. I’d not have it any other way.


    • Thanks, John! I love that reminder to take a deep breath and relax. People can bloom where they are planted and so can online communities.

      And yet.

      Which platforms are better for knitting people together as a loving community of friends? Which platforms are better for archiving or for future searchability? Which platforms allow someone to scoop up everything they have contributed and port it to a new platform?

      Those are some of the questions I’ve seen come up when people talk about old skool BBS and listservs, FB, PatientsLikeMe, and others. When people have a choice about where to start a new community, what questions should they ask at the outset? What goals are served on one platform, but not others?

      • All great questions, but very little research in this area, so no way to answer them in any kind of objective, data-driven manner.

        I’m not sure portability of one’s narrative replies in a support or health community is a feature most people are looking for (especially since they’d made little sense taken out of context of a full discussion thread). Nor do most people who join these communities probably care about the “searchability” of their discussions (other than to be able to specify privacy filters that meet their needs).

        Thousands upon thousands of “old skool” communities still exist online because *they work*. They work for the needs of their respective members. I see people discount these technologies simply because they aren’t shiny and new. For most people, a community like this isn’t about their health data, it’s about their human contributions and sharing with others.

        The questions they ask should be simple and satisfying of the person’s individual and unique needs. For instance… Does the community provide information and support for the person in need? Are its members welcoming and open? Is the community active (e.g., are there dozens of posts within the past week) and have a solid userbase? Does it have technical features that foster discussion? Does it have privacy options that meet the user’s needs? Does the community have a set of community guidelines? Does the community have active oversight by a team of moderators and administrators?

        Those are just a few that come to mind…

  10. I found communities helpful when I was seriously injured and find the media and platform changes but most important are welcoming and accepting members. My DPHIL project involves building an online learning and trials platform where people can do their own research as a group.

    Security is important for vulnerable populations I once had my IP hacked on a forum by an insurance company who was trying to get out of paying what they owed. People don’t realize that everything is public and that many so called patient orgs are not run by patients.

    I would like to see people have a space where they can learn, support each other, be a place for resources and then make their own choices .

    I never thought Twitter could be useful but it is and even on Facebook I work with MDs and students who offer their expertise to rural populations for free and we all learn from each other. I have found my online contacts are a rapid and strong force for good when a medical decision is needed and I don’t know what to do.

  11. An interesting discussion. As a patient I have different information needs during different phases. For example during the phase of investigation and finding the appropriate diagnosis, I want to know all the relevant information about the possible diagnosis.
    Once the diagnosis is known, I would like to have a list of all possible types of treatments and their consequences. Treatments that are considered to be ‘best practices’ or even evidence based. I would use this information to be a a real partner in discussions with my doctor. As a patient, I would like to supplement this information e.g. with medication, its side effects, results of treatments of other health care providers (e.g. physiotherapists) etc. All to be better prepared for my doctor visit, to give my doctor a more holistic view and to be treated more effectively.

    A platform that would support this and that would also be used by physicians would be of great help. A platform like patientslikeme comes close to this, but in my experience is not being used by physicians, unless it will save them time. The result is that all these platforms are primarily used to exchange experiences and to ask questions to non physicians. They lack the structure for real knowledge management and physician engagement.

    I am very much interested in ideas and examples in which this challenge has been addressed.

    • Great comment. I am interested in why you would want clinicians to be part of the community. As a backstop for the professional opinions you are getting locally? Also, do you think there are certain conditions or situations that lend themselves more to peer advice vs. professional advice?

      By the way, I can see clear benefits for a clinician who is part of a patient community — Deanna Attai, MD, is an example of someone who is deeply involved with the #bcsm community on Twitter, for example, and says that she gains insight for her practice from the conversations.

      I invite anyone following the thread to answer, by the way!

  12. My perspective is the Dutch Healthcare system. The last 10 years much progress has been made to transform this system from supply-driven towards a demand driven system.
    Despite this development, for a patient with multiple problems or in need of a multidisciplinairy approach, the system still seems very similar to a realm with many islands on which every healthprofessional is doing it’s own trick. The patient has an important role to make sure that the professionals involved, have the correct and complete information. Furthermore the patient trusts that the care professional knows the best practices and applies state of the art treatment for his/her care problem.
    I think that this confidence is to often embarrassed. In my opinion more real patient engagement can improve the quality of care enormously. In order to come into this position online patient communities should evolve and knowlegde management and knowlegde transfer should receive more attention. This will only happen if clinicians are willing to contribute and are willing to consider patients as partners in this endeavor.
    I expected a lot of PHR-like systems, but to my knowlegde the level of adoption is still disappointing. I wonder which conditions should be met to improve patient engagement, knowlegde transfer and the effectiveness of medical interventions.

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