Online patient commmunities support patients through shared stories and experiences. I used to think it was unfortunate that the medical community didn't have the answers and support that patients needed. Lately, through my readings about communities of practices, I am refocusing my thoughts.
I am glad that patients have communities where they can share and connect with others. Medical challenges can consume and impact our lives. Why should we assume that one or a few health care providers would have all the perspectives a patient needs.
I went searching for online communities for patients. I found this list of top five communities: PatientsLikeMe, HealthBoards, MedHelp, WebMD and Healthunlocked. In reading through the list I am intrigued that several of them started with people who struggled with their own medical illness.
I joined PatientsLikeMe as a caregiver as I have a family member with a chronic illness. I found the variety of comments and experiences shared interesting. This included comments about how they are doing, questions about diagnosis and treatment, reactions and side effects along with insurance and payment issues
I also found this article about whether online communities are worth it interesting to consider the value of these online communities for patients and health care providers. It specifically mentions suggestions for healthcare providers such as learning from users and connecting patients to your services.
I was thinking how it might be helpful for healthcare student to lurke and study these communities. I think students could really benefit from this first person account rather than textbook cases. However, as I think about a community of practice and these students wouldn't belong as they are not experiencing a condition. For example, signing up for an account on PatientsLikeMe requires you to identify a condition.
With an increase of these topics being covered on more open social media sites like Twitter. This article discusses the use of twitter as a source of health information.
What do you think? Should health care students be exposed to these patient communities? Would you use a patient community?
I think online health communities are extremely important to patients. Speaking from personal experience, the communities provide support similar to what 'group therapy' would provide. Patients should take care to not let a group diagnose them or influence important medical treatments without speaking with their doctor. There are a lot of posts about symptoms people are experiencing but I think most are looking for others to relate to.
ReplyDeleteAs far as healthcare students go, I think it's a good idea for them to explore them to understand what patients go through. Everything from a delayed diagnosis to descriptions of emotional turmoil surrounding being a patient with a chronic illness. Great post!
Thank you for your thoughts about online health communities! I am very interested if there is a way to help connect these spaces to improve care by health providers.
ReplyDeleteI absolutely do think that health care students should be exposed to these communities! Just as professors can benefit from understanding their students’ experiences, so too can health professionals. As our sick care community is not our health care community, it would benefit everyone, including doctors, if more information was shared; not as a diagnosis, but as a support system for patients and as insight into what people are experiencing. You would need to consider HIPPA constraints . . .
ReplyDeleteThank you! I think the issue of HIPPA is interesting since it is the patient is initiating the share of information.
ReplyDeleteI wish online health communities like these were more prevalent ten years ago (I'm sure they existed in some form, but I don't believe they were anywhere as sophisticated as they are now). Having a support system from an online community while dealing with a family member battling a chronic illness may have been really comforting, especially later when the grieving process began.
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