Patient Education — with patients teaching us what’s most important
From research to activation in MS
The highlight of my summer was a European speaking tour making stops to talk with the leadership teams at six different pharmaceutical companies and at Cannes Lions on the Healthcare Insights stage. I give a talk called “Unfiltered Truth: 10 Lessons Learned in Patient Social Networking” sharing real case studies where simply listening to patients in as unfiltered a way as possible, leads to massive opportunities for patient education.
The case study that consistently resonated with European audiences is the story of the “MS & Cognition” Resource Center we launched on MyMSTeam in partnership with Biogen. Our work together started with social listening that identified cognitive problems such as “brain fog,” “difficulty finding the words to say,” and “forgetting my best friend’s name” as a top-five symptom impacting quality of life. We decided to dig deeper with an 830-patient quantitative survey that validated that, in fact, 52% of MyMSTeam members suffer from cognition issues. But we were surprised to find that 49% of those people actually started experiencing these cognitive problems before they were diagnosed with MS.
This is astounding. And it debunks some of the conventional wisdom saying cognitive problems typically arise after diagnosis with MS. The reality is that many people (and their primary care physicians) were chalking up issues such as memory loss, difficulty multitasking and trouble concentrating to a wide range of other possible causes, from lack of sleep, to age, to menopause and not getting referred to a neurologist for an MS diagnosis. And even those who had been diagnosed with MS weren’t necessarily aware of the link between cognition, brain health and MS because their neurologists weren’t talking to them about it. This is a patient education gap if ever there was one.
Once we identified this gap in knowledge, we knew we needed to do something about it. So we worked closely with Biogen to create an unbranded, cognition resource center, an innovative patient education program designed to help people understand how MS impacts cognitive functioning. The center shows the the signs to look for, provides practical tips for managing cognitive challenges, and offers guidance for discussing brain health with your neurologist.
The response in the first two months has been overwhelming. Tens of thousands of diagnosed MS patients have come to the resource center, with thousands downloading doctor discussion guides and content to help them manage daily cognition challenges and initiate discussions with MS experts about brain health. Our members have underscored how valuable this information is to them as well as how much they appreciate feeling heard by a biopharma company.
What most executives find compelling about this story is that it ends in action. This is a research-to-activation story where real patients, on a patient social network, revealed an education gap that Biogen and we quickly filled with actionable patient education. It shows how patient social networks can be a powerful two-way communications channel for going direct to patients (in this case in an unbranded way). It led to them generating dozens of new ideas of things they could try in their businesses.
Now we’re bringing this tour to the U.S., sharing an updated “10 Lessons Learned” and adding examples of educating and engaging patients with branded DTC content as well. We’re hoping to inspire and be inspired by U.S. biopharma execs interested in implementing this research-to-activation model in any of the 29 conditions we currently serve – as well as in new conditions we’re exploring. If you’d like us to speak at your company, please reach out to start the discussion.