Pharma2022 - Sprout’s Top 6 Takeaways from the Patient Engagement Track
1. Including patient perspectives: Pharma companies are making progress on including patient perspectives from pre molecule selection to post launch. We heard examples of patient engagement being written into a company’s code of ethics, job roles with responsibility for patient engagement across the drug development process (five companies), making teams accountable for patient engagement, and finding new ways to engage with patients.
2. Patient engagement systematisation: Theories and frameworks relating to patient engagement are starting to be published, that is, there are research attempts to synthesise frameworks for “patient engagement” and an evidence base is starting to be established, meaning that a formalised approach to patient engagement along the drug life cycle is in reach.
3. Still need consensus: However, there was still a lack of consensus in the talks we attended around what “patient engagement” is (examples range from number of clicks in an app through to SOPs to involve patients at every critical milestone along the drug development process). And it’s still not enough of a priority to make it into the big conference meeting space at Pharma2022! This suggests that the regulator activity/academic activity and activity within some pharma companies has not yet been widely embraced.
4. Innovative ways to involve patients: As one advocate expressed it “patients don’t want to be in the centre – they want to be part of the gang”. One opportunity to make patients part of the gang is recognising that in many cases, patients also have professional expertise that could greatly contribute to the success of our projects. Patients are also researchers, graphic designers, copywriters, web developers.
5. Patient journeys and PAGs: there was an interesting case study of a pharma company supporting a patient advocacy group to develop the patient journey for their rare disease area, which represents a good opportunity for ensuring an authentic patient journey that fully incorporates patient perspectives and saves individual pharma companies increasing research participation burden on patients by each creating their own journey. Note: some participants dislike the terminology “patient journey” (“it’s not a holiday”) preferring “patient experience map”.
6. Patient services development: we heard from a patient services manager working within legal and compliance (how many headaches would that save?). There was also some discussion around the possibility of cross therapy opportunities (for example, in mental health) but no evidence was presented that pharma companies are currently engaged on cross therapy projects.