Hint: Include patient input in all decisions that affect patients!
As an eczema patient advocate, there’s one mantra I consistently share with pharmaceutical industry leaders: Include patient input in all decisions that affect patients!
This was a central theme in the session I recently led at the Pharma & Patient USA conference hosted by Reuters, titled “Move Beyond Patient Engagement: Creating Community-Wide Impact.” One of the questions that came up there and that we often get from pharma partners at MyHealthTeam is how to create programs that directly address patients’ top priorities and inspire action – at scale.
To that end, here are five proven approaches to increasing the impact of patient engagement initiatives:
1. Start in Pre-Clinical. Integrating the patient perspective into your program can never happen too early. For example, a few years ago Bioverativ worked with MyHealthTeam during the early stages of clinical trial design to better understand what people with hemophilia really wanted from a new treatment – which, it turned out, was pain relief (in addition to controlling bleeding). This is a great example of incorporating patient input into an important decision that directly impacts patients.
2. Have Patients – Not KOLs – Rank Patient Priorities. Effectively engaging with patients means taking your cues from the things that are bothering them the most. KOLs can’t always tell you that, but patients can. For example, a survey among members of myHSteam, revealed that 88% of respondents were “uncomfortable with the idea of intimacy.” So as part of our ongoing patient education work with UCB, we teamed with Erin Martinez-Gilliard, a licensed clinical social worker and certified sex therapist, to create a video Q&A focused on helping people living with HS to experience intimacy and effectively communicate with their partners. That built an authentic connection.
3. Empower Action. “Don’t just tell me about how hard my condition is…Tell me what I can do about it!” That is the sentiment we hear across MyHealthTeam’s 45 online patient social networks. Members are seeking actionable information, sharing practical tips, and helping others prepare for upcoming conversations with doctors. Here’s a great example of trusted, actionable content in Psoriasis launched in partnership with AbbVie US Medical Affairs a few months ago. It has attracted tens of thousands of visitors.
4. Think Inclusively. Patient communities are, of course, made up of lots of people who bring different backgrounds, experiences, and perspectives. Create programs that benefit different segments with the community you serve – and partner to amplify impact. For example, in serving members of MyCrohnsandColitisTeam, we’ve recently teamed with Color of Crohn’s and Chronic Illness (COCCI) to create patient education content designed to help accelerate diagnosis and treatment among BIPOC individuals affected by IBD, digestive disorders, and associated chronic illnesses.
5. Embrace transparency. Share the results of your patient engagement programs with the people who participated in them. In the conversations I have with other patient advocates and patients, people are really happy to share their opinions and perspectives – and they want to feel heard. For example, we’ve done extensive research among members of MyEndometriosisTeam to better understand their real-world experience, and the community has been so grateful to see survey results – that validate their own experience, inform the content we create and curate, and help the medical community better understand their reality through the dozens of publications, presentations and posters featured in journals and at conferences.
At the heart of all this is trust – and a shared commitment to improving the experience of living with a chronic health condition. This is why I joined MyHealthTeam as a community engagement manager. Every day, across MyEczemaTeam and our 44 other condition-specific social networks, we see people and partners engaging with and supporting each other – and that’s impactful.
For a full look at the 40+ chronic conditions MyHealthTeam serves, visit www.myhealthteam.com.