How to sustain an online patient community 

Editor’s note: Clare Murphy is the qualitative director at KJT Group. This is an edited version of an article that originally appeared under the title “Unleashing the Potential of Online Patient Communities.” 

Symbiotic: Denoting a mutually beneficial relationship between different people or groups.  

When you think about market research, a symbiotic relationship is not likely top of mind. Rather, you probably imagine a one-way street where the respondent provides information and the researcher culls insights. But what if this didn’t have to be the case?

A symbiotic relationship between patients and researchers is often what is achieved through online patient communities as they provide a safe space for patients to share their experiences and make connections while simultaneously cultivating ongoing insights. This means that you will gain a deeper understanding of the true patient experience without the one-way street relationship. This relationship allows us, as researchers, to see “behind the veil” and get closer to understanding the true impact of a condition on patients’ lives.

The importance of creating a symbiotic relationship through online patient communities

While online patient communities can be formed for any patient base, they are particularly beneficial in the rare disease space. In a recent Vital Voices vodcast, Amy Allen, Solutions Consulting vice president at KJT Group, interviewed Jill Pollander, vice president of patient services at the National Organization for Rare Disorders (NORD) who shared details on the importance of community for rare disease patients:

“When somebody receives a rare diagnosis, it’s really not uncommon to feel alone, isolated and a bit lost and in coming together, in finding other rare individuals, it really helps these patients to find a community, a home and a support. We say at NORD: alone we are rare, together we are strong.”

And while the benefit of an online community is substantial for patients, it also has special benefits for researchers and ultimately those who benefit from community insights.

What do online patient communities do?

1. Create an engaged pool of participants.

Once recruited, patients become a loyal source of ongoing insights – they recognize they are giving back to others with their condition which fosters greater responsiveness and candor compared to other research methods.

2. Amplify the voices of underrepresented patients.

Depending on their symptomology, patients with rare diseases may not be able or willing to participate in typical research – barriers can run the gamut from travel, communication, scheduling, symptoms that result in last minute cancellations/delays and more. Online communities ensure patients’ voices are heard from the comfort of their home and at their convenience.

3. Foster a sense of empathy.

Market research can feel cold and uninviting but patient communities meet people where they are in terms of language, environment and topic to uncover true experiences and perceptions while illuminating genuine human connections. These factors add depth that could not otherwise be achieved with surveys or in-depth interviews, ultimately fostering empathy-driven change.

How does an online patient community generate unique insights?

Online patient communities accomplish this in two ways: Ongoing unstructured (and/or semi-structured) patient conversations and regularly scheduled structured research activities (qualitative and quantitative). 

  • Structured research activities.
    • Pre-planned questions designed to answer specific business questions. They can be qualitative, quantitative or a mix. If desired, patients can see one another’s responses and comment/discuss.
  • Unstructured patient conversations.
    • Patients engage with one another, share stories, commiserate and build a sense of community throughout the duration of the community. Often this is truly a free-form discussion to see what patients organically share but topic prompts can be provided to keep discussions focused.

This combination of formats allows you the unique opportunity to get targeted feedback on specific research questions while also providing patients an opportunity to connect with others and make an impact by providing data that will improve support, resources and more. 

How to create a successful online patient community 

There are a few best practices to ensure patient communities are optimized for both insights and patients.

1. Create a clear plan.

When designing longitudinal online research, it can be tempting to “press go” before you’ve fleshed out your objectives and a plan for the entire duration of the community. However, this misstep is likely to get you into a lurch partway through, realizing you don’t have anything planned for the next month! Having a well-developed plan will ensure you stay on track and give you a benchmark for success at the end of the study.

2. Be flexible.

While a clear game plan is important, it is normal for priorities to shift and evolve. Patient discussions will likely generate new ideas and questions. Allow your team the flexibility to adjust your game plan as necessary to get the most valuable insights.

3. Engage stakeholders early.

While it’s natural to be hesitant to get stakeholders involved too soon in a long-term engagement, doing so is key to ensure insights are relevant and useful to your whole team. Otherwise, you may reach the end and find there are questions you wish you had asked or objectives you wish you had covered.

4. Gather patient feedback and input.

Although patient communities are intended for research purposes and should have clear objectives, it is important patients feel it is their community. Asking for feedback on all aspects of the community including topics discussed, format of questions and frequency of contact will ensure long-term patient engagement. And you may even uncover surprising insights when patients are empowered to share the topics they feel are most relevant to discuss.

5. Promote unstructured patient conversations.

Patients with rare diseases often have limited means to connect and engage with others with similar experiences. While the research likely requires more structured lines of questioning, providing patients with a place to talk and share openly is key to building a true sense of community.

6. Distill relevant insights for stakeholders.

Long-term communities generate a deluge of insights – it can be tough for anyone to distill down the most important pieces! It is important to help your teams, especially your more senior stakeholders, see the forest for the trees. Finding engaging and relevant ways to share key insights (e.g., videos, infographics) will ensure your data gains traction within the organization.

In summary, online patient communities offer a win-win relationship for researchers and patients, especially those with rare diseases. By fostering symbiotic connections and amplifying underrepresented voices you can gain deeper insights, while making meaningful differences in the lives of patients.