October 22, 2015
Stephanie Huston, Director of Community Development

It’s no secret that health-related topics are becoming a predominant theme in online social media. We’ve all woken up with some sort of symptom that we just had to Google. Even I, just the other day, woke up with an unbearable pain in my head. So I did some Googling and was convinced I had a meningioma. Convinced! Turns out I had what the kids call a “hangover” from one too many glasses of wine the night before. So I canceled my brain surgery, and popped an Advil.

But that’s our culture now. All the answers, all the support, and all the fear right at our electrically conductive fingertips. But the fact remains, the phrase “go online and do some research” has become increasingly popular, even during office visits with your doctor. And while many physicians view patient Googling and healthcare social media as an annoyance, some have embraced it as a way to encourage participation in (or possibly abdicate) treatment decisions.

Putting aside the hypochondriatic searches (as with my meningioma), patient online research and social participation can have a significant benefit for patient-centered care. A study conducted with chronic diabetes patients found that those who participated in online community activities gained a greater sense of empowerment and perceived social support and ultimately reported a greater intention to initiate and maintain communication with their physician¹.

The traditional hierarchy established within the doctor-patient relationship can often lead to discomfort or submissive behavior from an otherwise proactive individual. But when we feel prepared and socially supported, we’re ready to take on that interaction with pride and express our curiosities more openly.

And there is no lack of online health communities where patients can commiserate, educate, learn and ultimately empower themselves and others like them. These “zones of proximal development” ² create virtual communities of practice. Unlike a community of interest, these communities of practice exchange and develop tacit knowledge in hopes of furthering personal growth and practice. The trust, empathy and camaraderie built within these communities can rival even the closest friendships.

What’s more, many patients, particularly those with chronic illnesses, are now even prioritizing the opinion of their fellow community members over the recommendations of their doctor — especially when changing or titrating their treatments. This is not a unique characteristic of communities of practice. Within a corporate setting, studies indicated that workers were five times more likely to refer to a fellow co-worker for information than an explicit resource, such as a book or manual³.

A brief social listening review of our own Health Union condition-specific Facebook data revealed that across chronic illnesses (specifically MS, RA, Migraine, COPD, T2D, HepC) individuals speak about their physicians with a primarily negative sentiment. Not surprisingly, when patients don’t hear what they want in the office, they go online, complain, and ask the information of a peer. But this developing level of community hubris, and diminishing respect for physicians, could be hurting patient care as a whole.

So how do we as community managers fit into this medical love triangle? We shan’t provide medical advice; we don’t even want to facilitate the sharing of amateur medical advice. But the generic “talk to your medical team” response is no longer cutting it. Not to mention it tends to undermine the community rapport that takes so long to develop.

Jennifer Lebowitz of Health Union recently published an article here on Medium in which she discusses the parallels between community managers working with their community and parents raising a family. If we extend that metaphor a bit further, our community members are like a child of divorce. They not only have to trust their doctor and the community (their parents), they also have to feel as though they trust each other. If every other Thursday, Daddy talks badly about Mommy, and vice versa, the child is put in an uncomfortable, and isolating situation. The same applies for a patient. If the community has developed a focused negativity toward healthcare providers, a moderator suggesting “talk to your doctor” will not resonate with members and could be viewed as off-putting.

The first step is to re-establish the necessary and supportive role of the physician — not as a pedestal-topping hero, but rather as an essential member of the healthcare support triad. While this is easier said than done, the following tips can help:

Encourage Communication

If a patient comes to the community with a complaint that their physician is not providing enough information about a recent diagnosis or treatment, fight the urge to take a jab at the healthcare team, or allow a negative community vibe to spiral out of control. While a common enemy can appear to inspire closer communities, you cannot build a stable foundation upon mutual hate. Instead, provide content that focuses on improving the in-office interaction. This won’t undermine the authority of the physician’s expertise, but it will still acknowledges a flaw in their approach and provide a solution that empowers the patient to take control of the communication.

Respond with Questions

If a patient requests medical advice from the community, instead of passing the buck with a generic “ask your doctor,” try responding with specific questions they should bring back to their healthcare team.

Ex: Say a member asks “Should I start Enbrel? I’m worried I’ll have a reaction.” Focus your response not on answering the question, but on how they can find the answer through communication with their physician (the ol’ give a guy a fish-teach a guy to fish approach). A response such as “That’s a good question. Enbrel is a biologic treatment. When you speak to your physician, ask him/her to discuss Enbrel and other biologic options to see if they would be a good choice for you. Ask specifically about what you should expect from the treatment, such as potential side effects, that way you’ll better understand your risk for reaction” provides information, but more importantly, it makes the individual feel prepared and empowered to interact with their physician.

Engage with Professionals

With many of the sites at Health Union, we engage medical professionals as moderators and content contributors. While they still do not provide medical advice online, their presence reinforces the support and collaboration between community and HCPs and conveys a united front to the members. Additionally, the professionals are often able to articulate the specific questions for the patients to bring to their physicians, again making them feel more prepared and confident, as mentioned above.

Read the full article here.

1. Oh, Hyun Jung, and Byoungkwan Lee. “The effect of computer-mediated social support in online communities on patient empowerment and doctor–patient communication.” Health communication 27.1 (2012): 30–41.

2. Hoadley, Christopher. “12 What is a Community of Practice and How Can We Support It?.” Theoretical foundations of learning environments (2012): 286.

3. Davenport, Thomas H.; Prusak, Lawrence (2000). Working knowledge. How organizations manage what they know, 2nd Edition. Cambridge, MA: Harvard Business School Press.ISBN 1–57851–301–4.