Fostering symbiotic connections and insights through online patient communities that give back to patients with rare diseases.
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?
At KJT, a symbiotic relationship between patients and researchers is exactly what is achieved through online patient communities; providing a safe space for patients to share their experiences and make connections, while simultaneously cultivating ongoing insights means 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.
Why is it important to create a symbiotic relationship through online patient communities?
While online patient communities can be formed for any patient base, KJT finds they are particularly beneficial in the rare disease space. In KJT’s recent Vital Voices vodcast, Amy Allen, Solutions Consulting Vice President, 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.
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.
Amplify the voices of typically 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.
Foster a greater 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.
“Pharmaceutical and medical device manufacturers need to know that partnering with patients, particularly through patient advocacy groups, is not only permissible but provides for a stronger trial design and endpoint documentation. The collaborations facilitate study enrollment, participation, and retention. Yes, there are compliance issues at every stage.”
How does an online patient community generate unique insights?
Online patient communities accomplish this in two ways:
- 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 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 opportunity to connect with others AND make an impact by providing data that will improve support, resources, and more. Importantly, KJT has found that these online communities may be the only place some patients ever interact with others with their condition.
How can you ensure your online patient community is successful?
There are a few best practices KJT recommends to ensure patient communities are optimized, for both insights and patients.
- Have a clear game 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 – did you answer your key business questions?
- Allow for flexibility
While a clear game plan is important, it is normal for priorities to shift and evolve and 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.
- 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.
- Ask for 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.
- Actively 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.
- 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.
Author
Clare Murphy
Research, Associate VP
As Associate VP, Clare is responsible for uncovering insights to drive business forward for her clients. Specializing in qualitative research, she excels in conducting interviews across diverse audiences and methodologies. Clare is particularly passionate about rare disease patient research and enjoys bringing the patient voice to the forefront.
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