Why Online Patient Communities are Better than Real Life Support Groups


A support group  has many potential benefits, some of which include improving coping skills, reducing anxiety, depression, isolation, ignorance about the condition and others.  Online patient communities (OPCs) are a recent phenomenon.  Some are open (with respect to type of member or fee) and some are more focused and closed.  Irrespective of the type, OPCs have blossomed. It is a major indication of social media’s penetration into healthcare (or vice versa) and why physicians need to establish a presence in social media.  While there are still reasons why support groups are popular, OPCs have definite advantages. I will highlight a few of them.

1.    Many patients and caregivers cannot physically attend a support group. In the early phase of a support group of patients with implantable defibrillators I led for over 20 years, I was informed of scheduling conflicts and transportation difficulties (some patients coming from distances hours away either couldn’t get a caregiver to drive them or couldn’t drive in late afternoon dusk/darkness). In addition, some medical conditions themselves prohibit travel.  My own mother with lung cancer had difficulties getting to her support group in NYC with her oxygen in tow for which she had to ultimately forego meetings altogether.  OPCs afford logistical convenience to both patients and caregivers. OPC conversations may occur in real-time or accessed at the participant’s convenience. I would have to believe that fewer people fall asleep during OPC chats and reviews than during live support group meetings. In addition, full conversations such as those on Twitter Tweet chat are available for review.  I participate in a number of Tweet chats which inform and inspire me (breast cancer social media: #bcsm, healthcare leader: #hcldr, death with dignity:  #dwdchat, carpool healthcare: #cphc, treatdiaries chat: #treatdiarieschat, and others.

2.    OPCs represent the same demographics as patients in general.  Questions one may ask about OPCs are: Are they representative of patients with a given condition? One German study looking at patients with scoliosis who participated in a scoliosis-specific OPC found that the demographics were similar to scoliosis patients in general.  Another evaluation, one examining the demographics of a group of fibromyalgia patients of Patientslikeme demonstrated the same result, namely that the patient group was representative of those patients at large. Since support group patients are usually by definition geographically (and therefore more likely socioeconomically and culturally) to be similar within a given group, one might speculate that OPCs are more representative of the general population than a support group.

3. OPCs are more attractive for provider participation.  In my professional experience, physicians rarely take part in support groups.  They are a busy lot and in addition, though they certainly care about their patients, they might not be good public speakers, facilitators, or organizers.  I happened to have loved all of those things and never missed a meeting in over 20 years (the group met quarterly).  While there are guidelines for physicians on social media (emphasizing confidentiality and separation of professional/personal communications), physicians acting as patient advocates addressing general questions about a condition or offering knowledge about navigating the healthcare ecosystem is valuable.  Physicians will also get a more candid, drilled down view of patient concerns raised in OPCs.  Being anonymous or even registered and ‘lurking’ (not verbalizing but just observational ‘listening’ can be extremely useful by helping them see how important OPCs are to patients and caregivers as well as hopefully revitalizing the humanism of their perspective and practice.

4. Caregivers are more apt to participate and share information. According to a recent report on family caregivers, 33% of patients and 52% of caregivers (as defined in the study, 39% of all people over 18 years old are caregivers) participated in online social activity related to healthcare in the past year. In that same survey, 34% of caregivers “Read or watched someone else’s commentary or experience about health or medical issues online” and 22% of caregivers went “online to find others who might have health concerns similar to yours.” From my own experience with ‘live’ support groups, there are usually a few people who dominate the conversations.  Likewise, in OPCs I think there are those who are more ‘vocal’ than others, however there are more participants than just a few. Caregivers are a critical and underappreciated sector of the healthcare ecosystem and we must find ways to support them.  I was impressed on a trip to China how the system encourages and engages caregivers. OPCs can be one way in which caregivers are encouraged and supported with information and resources as well as peer emotional support (the physical and mental tolls of caregiving are also very under-appreciated).  For more on caregiving I would refer you to an excellent book “We’re in This Together” by Rob Harris.

5.    OPCs afford focused access to helpful third parties. Imagine having a pharmaceutical or medical device company or the NIH having deidentified access to conversations and offering clinical trials or informational assistance to group members.  While some may see this as Big Brother, it is going on now on Facebook and elsewhere with respect to marketing which is far less important than what one might envision here.  While there might be ‘opt out’ provisions, I would actually see this as a reason to join an OPC.  There could be no greater type of ‘customer rewards’ program than a potentially lifesaving one.  There will be guidelines surrounding privacy and use of this data (legislation and regulations are being addressed now).  However, if done properly, OPCs can then become much more useful to participants.

          Just as online social media is not a substitute for real life interpersonal exchanges, OPCs will not necessarily replace the real life experiences of support groups.  However, they do offer a different experience which brings together people from all over the world.  In a universe where medical technology approval is estimated to be 4 years behind in the USA compared to the EU, wouldn’t it be refreshing to converse with patients receiving those therapies now?  And the potential to interact with more healthcare providers offers a unique and potentially more rewarding exchange. I was in a breast cancer social media Tweet chat this week and one patient stated that the online group was her only and most treasured source of support.  It was touching and brought to light the importance of OPCs. Let’s use them, develop them, and spread the word.

 

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About davidleescher

David Lee Scher, MD is Director at DLS HEALTHCARE CONSULTING, LLC, which specializes in helping digital health technology companies, their partners and clients. As a former cardiac electrophysiologist and pioneer adopter of remote patient monitoring, he is uniquely qualified to address both clinical and operational concerns of clients. Scher was Chair of Happtique's Blue Ribbon Panel which established standards for certification of medical apps in the categories of safety, operability, privacy, and content. He is a well-respected expert in mobile and other digital health technologies and lectures worldwide on technology and its impact on patients and healthcare systems.
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13 Responses to Why Online Patient Communities are Better than Real Life Support Groups

  1. Lisa Nolan says:

    Hello David,

    Just wanted to say that this is a super article and I’m particularly interested in the various studies that have been done – thank you for including the links.

    I’m on the same wavelength as you. In fact, I recently wrote a similar blog listing reasons why Twitter is so useful patients and carers – link is here: http://blog.virtualadmin.ie/2013/06/8-reasons-why-patients-and-carers-should-use-twitter/

    Another benefit I have observed on Twitter is how kind, comforting and affectionate patients’ peers are on Twitter. I think when ‘physical personal space’ isn’t an issue, people feel able to express kindness freely – and I have no doubt that a thoughtful message via Twitter would have the same effect as one spoken face to face.

    And who doesn’t need spontaneous kindness when they are feeling low :)

    Thanks again for this very informative piece.

    Lisa

  2. amyohm says:

    Thanks David for your commitment to this topic and unique perspective. We agree and are honored to be in a position to help patients and caregivers along with healthcare professionals in sharing the patient story. OPC’s are in high demand and the benefits are aiding in the well-being of so many. Glad to see this topic in play.

    • Thanks, Amy. The emergence of healthcare in social media (not so much social media in healthcare yet) is exciting. It might very well serve as the birthplace of participatory medicine. I look forward to watching this phenomenon evolve.

      • amyohm says:

        Great point! We hope to play a major role. Keep up the great work in all you do to bring attention to this evolution in healthcare.

  3. Dysautonomiac says:

    I wish physicians with knowledge of rare diseases would host online chats. My daughter suffers from dysautonomia, Ehlers-Danlos Syndrome, POTS, chronic migraine, cyclic vomiting. Major dysautonomia centers are few and far away. Patients I communicate with in FB groups and other social media know a lot more than our local doctors, so we get a lot of insight from them. But we are all grasping for new treatments as pts get sicker and sicker. Do you know if dysautonomia specialists at places like Cleveland Clinic, Mayo or Vanderbilt, and so on ever lead these important tweet chats? Thanks for this important post.

    • Thanks for your comment. Unfortunately I cannot answer your question. What I would recommend is to possibly see if patients who are treated by those physicians might discuss their participation with them. Good luck.

  4. Pingback: TapGenes | Why Online Patient Communities are Better than Real Life Support Groups

  5. Hi David- Thanks for talking about online patient communities from a physician’s perspective. As a personal patient advocate for my family in addition to my work in healthcare on the med-tech/industry side, I’ve experienced the challenges of trying to find reliable information and have turned to the internet and patient communities for supplemental support. While I believe all participants and observers need to use their best judgement and take comments and feedback with a grain of salt, the benefits far outweigh the negatives. Much like reading reviews on TripAdvisor, it’s important to not take everything at face value but to evaluate the comments and information from a wider perspective. I’m glad to see the stigma being erased from these communities and for them to start receiving the credit they deserve.

    I reblogged your article, it’s my first blog and first post however I’ve followed you and your blog for awhile now. http://wp.me/p3S5sk-5

  6. Pingback: Going Social to Connect More NICU Families

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