5 advantages of online patient communities
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 Togetherby 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.