5 advantages of online patient communities

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 Tweetchat are available for review.  I participate in a number of Tweetchats which inform and inspire me (breast cancer social media: #bcsm, healthcare leader: #hcldr, death with dignity:  #dwdchat, carpool healthcare: #cphc, treatdiaries chat: #treatdiarieschat).

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 Tweetchat recently 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.

David Lee Scher is a former cardiologist and a consultant, DLS Healthcare Consulting, LLC. He blogs at his self-titled site, David Lee Scher, MD.

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  • http://glutathionepro.com/ Glutathione Pro

    Online health communities are a fantastic resource for anyone dealing with a disorder or interested in learning more about their health. It is easier to understand the plethora of information when it is presented in a friendly, community based environment rather than a stale medical article that is hard to relate with.
    More and more health communities are popping up, providing a wealth of knowledge for anyone interested.

    • dlschermd

      Thanks, GP. indeed, ‘dealing’ is difficult for many and OPCs help.

  • penguin50

    In theory, online patient communities are fantastic for all the reasons you describe so well. But in my own experience, they are fountains of hysteria, misinformation, and cliched sentiment. I don’t wish to insult anyone with my honest opinion. Maybe I’ve just not found the right OPC. I’m truly glad they exist for those who want them because I can see how important and helpful they are to some patients. But for myself, I stick to reading medical journals for information (with caution, realizing I have no training in medical science), and I rely on my own friends for emotional support.

    • Jess

      My sister was on one open online patient community and it was a nightmare. So much misinformation! There were a few “alternative health” nuts on there and they’d spout off about the importance of burning Himalayan Rock Salt candles and using homeopathic drops to get white cell levels up and keeping to a strict “raw food” diet while on chemo and all sorts of nonsense. One even said that pasteurized milk was “poisoned” and that sick people needed fresh, “raw”, unpasteurized milk… this, to an group with a lot of immune-compromised patients!

      On another OPC they all got tricked by someone who didn’t even have cancer at all, never had, but was FAKING it brilliantly (it wasn’t until she allegedly “died”, but no-one could find a death notice ANYWHERE when they went looking to find out what funeral home they should send flowers to, that they realized they’d been duped). “On the internet, no-one knows you’re a dog” ….. and no-one knows whether the people they’re interacting with are for real or just some kind of sicko attracted to medical support communities.

      A small, closed community with an active moderator is the only way to go, in my opinion, where even though you can use an anonymous screen name in the community they have to have your real name and either address, phone number or doctor’s name before they will register you. And when patients start giving other patients unsound “medical” advice, the moderator can step in and stop it.

      • dlschermd

        You point out many of the real potential pitfalls of OPCs. Thank you for your real life examples. As in any open forum or technology, the freedom of expression can lead to abuses. However, one would hope and expect others in the OPC to challenge potential dangers and fraud if possible. Regarding alternative treatments, one should never take ANY medical advice and apply it from an OPC. It is a potential source of information, not an online consultative service from physicians or anyone else.

    • dlschermd

      There are many benefits for OPCs as I have outlined. Some relate to information and some to other kinds of support. I believe that there is not one single support tool for most people and that the best solutions for individuals might be gleaned from multiple approaches.

  • carolynthomas

    Dr. Scher, thanks so much for this comprehensive overview of OPCs. I’ve been an online member of Inspire.com’s “WomenHeart” community since surviving a heart attack five years ago. This particular group, as you mention in your second point, shares an important demographic in common: each of the 11,838 group members is a female living with heart disease. There are also special interest subgroups within the main umbrella group – like Young Women With Heart Disease, or Spontaneous Coronary Artery Dissection, or Heart Arrhythmias. Compare that reality with the cardiac rehabilitation program that I attended in person for four months: I was the only woman there, and easily the youngest in our group by 2-3 decades. It would be fair to say that I had nothing, zero, zilch in common with my fellow cardiac rehab friends.

    But online, I could log on at 5 a.m. if I wanted to and browse topics of specific interest to me, participate in ongoing group discussions, or start my own discussion question. Every question I asked (and I had a million of them at the beginning!) was invariably answered promptly by group members from all over the world. And recent research on the reliability and accuracy of health information offered through OPCs is encouraging: inaccurate or misleading advice in support groups is almost always self-corrected by other members shortly after being shared. And as the British Medical Journal once reported, perhaps the word “patient” in these groups should be replaced with “medical end users” – given the savvy nature of experienced OPC participants.

    Beware of those OPCs that are run by industry, essentially co-opting patient engagement – like Johnson & Johnson, for example, that launched a patient site called The Fatigue Coalition, an OPC to promote off-label uses of the J&J drug Procrit for cancer patients (despite studies showing that “Procrit should NOT be used for the treatment of fatigue in cancer patients”). Or Pfizer’s National Alliance on Mental Health group, launched in order to turn this “non-profit” into what marketers call a ‘Trojan Horse’ to promote the antipsychotic drug Geodon for non-approved use in children – ultimately part of the reason for a record $3.2 billion criminal fine settlement. More on this at: “Has Industry Co-Opted Patient Engagement” – http://ethicalnag.org/2012/10/16/industry-co-opted-patient-engagement/

    This may come as a surprise to health care professionals, but not every OPC needs a health care professional to moderate it – although I wish more docs would take your advice and lurk behind the scenes at length to get a sense of what patients are actually going through. Indeed, some docs are downright incompetent when it comes to answering patient questions
    online. Consider, for example, the Indiana cardiac surgeon on the site HealthTap, who answered a patient’s online question about what had caused the arm pain during her heart attack with this: “The pericardium is innervated by C3,4,5 (Phrenic nerve). There may be some neuronal connections to the intercostobrachial nerves.”

    Really. Seriously.

    • dlschermd

      Thanks for your thoughtful comments Carolyn. I also appreciate comments about the sites run by industry. There is a rightful place for these companies in social media but it must be transparent and have the focus on assisting patients. I believe that the initial success of online patient communities has exactly been the absence of physician moderators. People are more open to sharing in that type of setting. That being said, as more physicians become involved in social media, the experience will become more robust and beneficial. Communication is the key.

  • lotzakids

    I participate extensively in a few OPC. There will always be the detractors, although the admins in my groups are pretty vigilant. My son has Trisomy 18 and he is alive. The condition is not terribly uncommon, but survival is. There is only one other girl (over the age of 1) in our geographical area with it, but through online communities, I’ve connected with hundreds of parents across the globe. And in sharing information, we’ve all been able to help our children. Individual doctors just don’t see enough of children like ours to have that much experience. And there is the very real added benefit of being able to connect with others who “get it.” Not feeling all alone is priceless.