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Customer Experience and Design

The Social Support Group Coming to a Provider Near You

What are the benefits of online patient communities?

I find myself answering this question quite a bit lately. It struck me this week that I have never answered this question on the blog. But, first things first, what is an online patient community? Online patient communities are, essentially, condition specific socially enabled support groups. These networks provide patients with an opportunity to connect with those that are experiencing similar challenges. Together this collective of voices provides helpful discussion and the sharing of resources. By their very nature, their benefits are many. However, when they are organized by a trusted authority in care, namely healthcare providers, the benefits grow quite dramatically.


So, here is my list of the benefits of online patient communities. Have any more to share? I’d love to hear more from your experiences in the comments section below.

  • Social provides connections to those that are not mobile. Let’s just be honest, appointment scheduling conflicts and transportation difficulties are typically a part of the patient experience. It is oftentimes the case that patients and patients-by-proxy (caregivers) cannot physically attend a support group. Any opportunity to lift barriers during the course of treatment is a welcomed reprieve from everyday turmoil.
  • Patients-by-proxy are more likely to open up. According to Pew research, while 33% of patients participate in online patient communities, more than half of patients-by-proxy do so. In that same survey, 34% of these caregivers actively read patient commentary about a specific medical issue online and 22% of those caregivers actively reach out to those that might have similar concerns.
  • Online patient communities provide support without bounds. Social networks are used, quite frequently, by the retail and consumer goods industries for consumer outreach purposes. I don’t know of a loyalty program stronger than one that could be used to save lives. Social communities are a fabric of ties that lead to sources of support, information, and collective experience. The goal of these communities is to foster communication between those without knowledge and experience to those that can “mentor” and provide support. More informed patients are healthier patients. Some of the tangential benefits of this enablement include: 1) Better understanding of health and medical conditions, 2) Improved recall of the care plan, 3) Feeling more in control of care, 4) Taking better care of themselves, and 5) Better adherence to medications as prescribed.

There are some additional benefits for the healthcare provider as well:

  • Better sample groups mean better research. For those researchers aimed at helping through analysis, online patient community demographics are actually a more accurate representative sample of a given patient population than can be found in a traditional support group. There are two studies that back this claim up. One study looked at an online patient community specific to scoliosis. Researchers found that the members of this community had similar demographics to the scoliosis population as a whole. Another insight is taken from the fibromyalgia group on PatientsLikeMe that showed this group to be representative of those with that condition at large. Why is this? Breaking down geographic boundaries is a great way to also break down the socioeconomic and cultural chasms that often exist in traditional groups.
  • Time efficiencies in group care. Check out any online patient community and just underneath the surface you will find the voice of the members mentioning that they were unable to get the medical information they needed from their clinician. So, these patients often turn to Dr. Google. Using these communities, clinicians can provide accurate information is a mass customized format to an entire community of similar patients. This is particularly helpful in those instances when new information or alerts need to be provided to the entire population at one time
  • Strengthens the partnership between patient and provider. Let’s just be honest, a typical physician schedule does not often leave time for participating in support groups. With a provider sponsored online patient community, a clinician, in the form of the community manager, is on call 24/7. Provider sponsored clinicians that act as patient advocates to address general and condition specific questions to the entire community are a valuable asset. Many clinicians are surprised at how different the questions patients will ask in online patient communities are from those they will ask in the doctor’s office. For example, migraine patients will often ask Dr. Google “will I die from this?” while physicians rarely if ever hear that question in the office.
  • Social synchronization with care protocols. When these social features are enabled through the patient portal, patients become truly enabled with knowledge. There, within a single view, patients can take their new found knowledge and then apply that knowledge to their care protocols. This experience can be taken a step further through gamifying that experience. For more information, please check out “Healthcare Gamification: Is it time for Physicians to prescribe gaming to patients?” and “Beyond Gamification: Revolutionizing Healthcare with the Quanitifed Self“.

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Melody Smith Jones

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