Opening up about patient engagement

Inspired by this year’s Patient Centricity and Engagement Conference, Philippa Pristerà uses this mini blog series to reflect on key barriers to patient engagement raised during the event, and share tips and guidance on how to overcome them, collated from her own experience and those shared by speakers from the day.

Opening up about patient engagement

Two patient advocates who spoke at the conference both described pharma as “secretive”. It seemed to stem from the lack of transparency and communication around how and when they would be engaged, and when they couldn’t be. One had recently been stopped from attending a conference tailored for healthcare providers, but no one explained to her why.

This kind of ‘blocking’ can create a feeling of secrecy and depreciates industry messages that they see ‘patients as partners’. She also made the brilliant point that pharma companies do very little to communicate the fact that patients can get involved with their work - “I see the good side of pharma, but you don’t show it!”.

Health research organisations, academic research centres and charities make ‘How to get involved’ a prominent statement on their websites. But pharma companies don’t often showcase the breadth and depth of their patient engagement activity to the public and do even less to provide easy paths for other people to get involved. There are challenges at all stages of research and medicine development, but so few of them get voiced to patient groups to help solve them.

Regulations within the pharma industry may make it difficult to maintain an open dialogue at every step of a medicine’s development. But, encouraging regular communication with patients and being open about where R&D is at, and the shared challenges that exist could be adopted by all.

Fix it by…

• Shouting about your patient engagement. You do more than people know, so open up and be transparent about the engagement activity that is going on
• Creating opportunities for people to get involved in an open and inclusive way. Let people know what issues you are facing and how they can help
• Committing time and resource to frequent communication. This includes sharing more about your research activity and issues you face, sending regular updates for shared projects, and providing a continued point of contact for ad hoc check-ups
• Providing feedback on the project so patients know their contribution makes a difference. This makes them feel valued, demonstrates a company’s commitment to act on their insights, and reinforces positive feelings that will make them more likely to engage with future work and even inspire others to do the same

Missed a post in the series? Catch-up here:

• Making engagement processes more patient-friendly
• Committing time to making meaningful connections

In need of further guidance?

• The Patient Focused Medicines Development team have recently launched a new quality framework that can be used as both a planning tool and assessment tool to ensure you are carrying out high-quality, meaningful engagement.
• For something less focused on medicine development or medtech, check out the UK Standards for Public Involvement, which were co-produced by a UK-wide partnership to improve the quality and consistency of public involvement in research.