Author: Laura Kolaczkowski, Co-Principal Investigator of iConquer Multiple Sclerosis Patient-Powered Research Network (MS-PPRN).
Multiple Sclerosis (MS) Awareness Week (March 5-11th) is a weeklong national effort to increase awareness of MS, and provides an opportunity to examine how asking and listening to communities of patients can improve how we make connections between people living with chronic conditions and the research community. Finding the right way to make this connection is a key challenge for the partner networks within the National Patient-Centered Clinical Research Network (PCORnet), an innovative initiative of PCORI, which have a unique opportunity to engage people living with chronic conditions, such as those with MS, by connecting them to the research community. This guest blog examines one network’s experience of taking the guesswork out of the collateral development process by enlisting patients to help make their marketing materials more relevant to people with MS.
In response to requests from iConquerMS™ community members, the Multiple Sclerosis Patient Powered Research Network (MS PPRN) recently revamped promotional materials, images and message on our website. We were challenged by feedback to change our recruitment and engagement approach because the initial message that anchored our promotional materials regarding the importance of “Big Data” did not resonate with our target audience (people with MS). We also heard from many others that they could not identify or relate to the images nor the messaging on our website. For example, our community members felt the stock images that we originally selected for promotional materials (see image below) have been spotted on many other websites and in printed materials on non-MS topics and, though they were a pleasant, smiling group of diverse people, our community members felt that they did not represent the multiple sclerosis population.
Patient community members in iConquerMS™ include talented people from diverse professional backgrounds. We asked our engagement committee — which includes people living with MS who have publicity, advertising and marketing backgrounds — for ideas to reshape our message so that it would be meaningful and resonate with our community. Because we operate on a limited budget, they were also encouraged to develop those ideas into usable marketing materials. This special group picked up the challenge and so much more.
“Be Part of the Cure” is the call to action our engagement committee identified as best suited to encourage people with MS to join iConquerMS™. This simple call to action replaces our previous lengthy explanations of the power of big data. This patient-led, ad hoc group then contacted members of iConquerMS and asked them to contribute photos. The stock images were replaced with images of people who are actual members of iConquerMS™.
For the main message, they crafted a simple display of information that resonates with all key stakeholders. Instead of getting bogged down with lots of words that mean something to researchers but not necessarily patients, the message is concise as to who we are, what we are trying to do, and how the reader can help.
We often hear talk about the importance of learning from our mistakes, but when it comes time to sharing these missteps we tend to shy away from talking publicly about the error of our ways. When we were asked if we might write this blog for PCORnet about our own lessons learned, we agreed this is an excellent opportunity to perhaps save others from similar pitfalls.
Lesson learned? Consult your target audience early and often, and be willing to adjust according to their responses. We have much to learn from our patient partners and they can add value to every part of the process.
This critical step to include more MS patients into the marketing of iConquerMS™ should yield authenticity to our efforts and produce greater participation. Even when you know what you’re doing isn’t working, it can still be hard to change directions; resources and often egos are often attached to what has been previously done. It took a giant leap of faith from the lead project team of iConquerMS and an open minded approach to turn this challenge into an opportunity to connect at a deeper level and trust the patient community to take the lead.
More about the iConquerMS™ network:
iConquerMS: Empowering Patients (Video)
Multiple Sclerosis Research Network Builds on Patient Input
When a Clinician Becomes a Patient
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.