I am delighted and proud (as well as relieved!) to say that last week saw the launch of the Charities Research Involvement Group’s ‘Supporting Patient and Public Involvement in industry-led research: guidance for charities’. Developed and written with my colleagues in the group, I’m thrilled to have been lead author, especially as it was my first ‘gig’ as a freelancer.
Note:The Charities Research Involvement Group is a collection of almost 40 charities who come together to share experience and best practice as well as tools and resources for supporting PPI. For over 10 years, members have work ed together to improve quality of PPI in research. For more information about CRIG, contact email@example.com
This is a much-needed guidance, which hopefully complements the brilliant resources already out there but takes a step by step, practical approach to helping charities in the UK with where to start when considering working with industry to support PPI.
The resource I wish we’d had…
Three years ago, as Research Involvement Manager at Parkinson’s UK, I started on my journey to understand how we could support the pharmaceutical industry to work with people affected by Parkinson’s to ensure their Parkinson’s research programmes were focused, sensitive and more likely to deliver better treatments, faster, to those people that needed it most.
Through our PPI programme, we’d already supported over 100 academic research teams to work in partnership with 120 people affected by Parkinson’s in the prioritisation, design and dissemination of Parkinson’s research. But whilst we had this well- established, successful programme in place to support meaningful involvement in academic research, replicating that in industry-led research was another thing altogether.
The complex nature of medicines development and approval processes, the systems, procedures and risk averse compliance departments as well as the multinational nature of pharmaceutical companies meant that even knowing where to start was a challenge. So, we started from the beginning and spent a good year networking, attending pharmaceutical patient engagement conferences and trying to make connections in this mystery world!
We eventually connected with the UCB (a pharmaceutical company) Patient Engagement Lead for UK and together we worked to deliver patient involvement in two of their projects.
Our experience of working with UCB was an incredibly positive one. We worked together as a genuine team and the projects with them were examples of really meaningful PPI. But working with them was also complicated and time consuming, particularly with regards to the contractual process and internal approvals processes. We learned a great deal from our experience, and we wanted to be able to share that experience with others.
It is here that the stars align to bring about this guidance…
Through our Charities Research Involvement Group (CRIG) meetings we learned that other CRIG members including Versus Arthritis, Asthma UK and Autistica were also starting to work with industry to support PPI.
So, in July 2018, CRIG worked with the Association of British Pharmaceutical Industries (ABPI), to bring together pharmaceutical companies and charities to discuss how we could collaborate more to support PPI in research. An insightful meeting which, among other priorities, confirmed the need for a ‘how to’ guide for charities to understand how they could collaborate with industry to support PPI. CRIG committed to producing this guidance and in April 2019, as a new freelancer, I worked with CRIG members and some PPI contributors who had experience working with pharma to outline what the guidance should cover and then over the last five months have worked with those same charities and PPI contributors to produce it.
I hope that charities new to this area will find it useful, and I’m more than happy to discuss the guidance with any charities who are considering working with industry to support PPI (firstname.lastname@example.org).
Thank you to Derek for allowing me to gate-crash his blog and a big thanks to Bec Hanley and CRIG for the opportunity.