Online Patient Communities: Are They Worth Your Time?

We use the Internet for all of our information needs. Movie times? Easy to find. Directions? Simple. Who was the eighth president of the United States? Let me Google that…

So it’s no surprise that people are using the web for medical and healthcare information.

The Pew Research Center found that one in five Internet users have sought others with similar health concerns on the web. (For people living with chronic diseases or who have loved ones with chronic diseases, the percentage is even higher: one in four.)

Information-seekers perform research before they’ve been seen by a healthcare provider and after diagnosis to learn more about their condition. There’s only so much we can learn from a consultation with a healthcare provider; sometimes we want a first-hand perspective from someone who is dealing with the issue.

Static sources of information (like articles, blogs, Wikipedia, etc.) are useful, but most folks want a more interactive experience when it comes to something as personal as their health.

An online patient community is a place on the web where patients and their families can meet to learn about and discuss their health concerns. These places are sometimes called “health communities” because a person doesn’t have to be anyone’s patient to have find value in them.

In these online communities, information-seekers can share their knowledge with one another without the presence or oversight of healthcare professionals (although healthcare providers are a feature of some communities). A chemotherapy patient might give advice on dealing with nausea in public. An eczema suffer might share what they’ve learned about avoiding certain chemical products.

A study of ovarian cancer patients found that online communities improve a person’s quality of life. “This study concluded that online discussion forums can play a crucial and indispensable role in dealing with diseases such as ovarian cancer, for which limited treatment options exist.”

The study also discovered that online discussion forums can be leveraged to promote healthy lifestyle choices, boost patient empowerment, spread information, and solicit feedback from users. Other studies have reported the same findings.

Sites like WebMD and Health Cloud traditionally offered static readable or watchable health information, but they experienced substantial increases in traffic when they introduced interactive features, like forums or comment sections on articles.

Social networking websites have developed as a place for health communities as well. People are having health-related conversion in public and private sections of Facebook, Twitter, LinkedIn and Instagram. My Health Teams creates social networks around individual chronic conditions, like HIV, autism, and different types of cancers.

Online health communities are especially useful for people with mobility impairments, embarrassing conditions, or responsibilities that prevent a face-to-face meeting with a healthcare professional. They also create avenues for health information for people who are dealing with language or cultural restrictions.

The Challenges of Online Patient Communities

The biggest problem with peer education is that it is not directed or moderated by trained professionals. The quality of health advice and overall health literacy can vary widely. It’s not uncommon to come across outdated information, grossly incorrect information, or poor reasoning.

According to Health Care Communication News, physicians see the benefit of online communities, but worry about the potential for misinformation to be shared.

Some communities address this problem by bringing experts into the conversation. HealthTap, for instance, features more than 30,000 healthcare providers who answer patient questions.

Furthermore, information-seekers don’t always use the best judgement when evaluating the information they find on these communities. There’s a tendency to assume the worst-case scenario or engage in treatment activities without a proper diagnosis from a healthcare provider.

Finally, there’s no scientific evidence to suggest that these online communities better the lives of people who use them. There is strong evidence to suggest that general health knowledge is good for everyone, but online health communities can’t guarantee medical accuracy.

Looking for places to engage with patients? Download our long list of online communities to check out.

The Benefits of Online Health Communities For You

As a healthcare provider, there are a number of benefits of joining online patient communities.

1. Learn from web users

By engaging with information-seekers online, you can gather valuable information about their problems that might not be available during an examination or consultation. This information can help you provide better care to the patients you see.

For example, a nutritionist might browse an online health community and learn that many young people with eating disorders attribute their condition to a tense and hostile home environment. But her patients don’t make similar complaints during her consultations while their parents are in the room, likely to prevent more hostility at home.

Going forward, the nutritionist can provide better care by visiting with the patients alone, asking better questions, and encouraging parents to evaluate their home environment. Without the opinions of anonymous Internet users, she would have never known that her consultations weren’t comprehensive.

2. Establish yourself as an expert

In healthcare, experience matters. Your name matters. Patients want to use healthcare providers with proven track records of helping other people and solving problems like theirs. In the market, expert providers can command top dollar.

By engaging with people online, you can establish yourself as an expert in your field. There will be documented instances of your knowledge available online for anyone to see. Over time, you’ll make yourself known as a resource that is experienced and helpful.

3. Drive traffic for your services

If you’re able to provide healthcare remotely (over the phone, Skype, or by email, perhaps), joining patient communities can help drive traffic to your website and services pages.

For example, a sleep consultant can provide treatment over the phone or even through an email. (If the patient required tests, they would have to go a hospital anyway.) The consultant could engage with health community users and leave a link to contact them for more information.

Even if a particular community doesn’t permit healthcare providers to actively sell their services, you can still “soft sell” yourself by using a signature with a link to your website and social media profiles at the end of your posts.

Even if you can’t do business remotely, you can still promote your practice online by participating in health communities.

Should You Participate in Online Health Communities?

It’s worth poking around some of the most popular online health communities that apply to your specialty, but we only recommend investing serious time into them if you can see clear business benefits from your involvement.

If you aren’t capable of selling services remotely, you’re too busy seeing patients to devote time every day to posting, or you’re building your reputation and authority through other means, you shouldn’t bother participating in online health communities.

Finally, if liability is a concern, you should avoid giving any health-related advice without the opportunity to give a proper consultation or examination. In fact, check your malpractice insurance policy: it may have stipulations that prevent the distribution of medical advice over the web.

But if none of those obstacles are standing in your way, patient communities are excellent ways to build good will, establish yourself as an expert, and build a healthier world.

One Last Note

If you decide to participate in any online patient communities, you’re bound to be asked some personal questions (if you disclose your position as a healthcare provider). Some of these questions can lead to more business.

We recommend having a special intake form available for these types of people that include a couple questions relating to the online community, such as…

• “Did you find my online advice useful?”
• “Is there anything better I can do with my online presence to be more helpful?”
• “Where do you go on the web for health-related information?”

With IntakeQ, you can create intake forms that can be easily emailed or linked to anyone. Check it out.