In May, when debate was raging as Pfizer tried to buy Astra Zeneca, I wrote a blog explaining that growing and nurturing partnerships with industry, from multi-nationals to small start ups, is one of our commitments at the BRC/U.
But I also set out that for me – and, crucially, the patients with whom we work – that’s just the beginning, and I mentioned a workshop we were planning to help us get an idea of how best to ensure that the driving forces of business are aligned with patients’ needs and wishes. We wanted to start a conversation “that helps industry and patients see how best to broker what should be a mutually beneficial union.”
We have today published the report from this event – OxBRC PPI Industry Report – which welcomed Simon Denegri, NIHR National Director for Public Participation and Engagement in Research and Chair of INVOLVE, as a speaker, who made two strong calls to arms. One was about the need to set the bar high in defining patient involvement in our relationships with industry, the other about the need to strongly challenge arguments around confidentiality where these crop up in discussion about industry working with patients.
The meeting drew a good number of patients from our PAIR group – I’ll keep this blog short so you have energy left to take a look at the report and see the issues raised, which focused on several themes, notably profit, trust & confidentiality and setting research priorities.
Coming from this meeting we have an action plan which we will take forward with a group of patients and colleagues from Oxford University Hospitals NHS Trust and Oxford Academic Health Science Network. Our aims are to:
• Fully understand the points at which patients currently provide input into joint projects between industry and the BRC & BRU
• Identify gaps where patients want greater involvement, at strategic and/or individual project levels
• Identify whether it is desirable/possible to set up a “ledger” where basic details of all joint industry BRC/U projects are publically available
• Assess feasibility and resource implications (for the BRC/U, researchers and patients alike), alongside confidentiality implications, to compile a mutually agreed action plan
• Consider how best to work on other issues of mutual concern as these arise, such as data-sharing with industry
• Work with partners to ensure industry knows about research priorities identified through James Lind Alliance priority setting partnerships
• Work with the NIHR Office for Clinical Research Infrastructure, the Oxford Academic Health Science Network, Association of the British Pharmaceutical Industry and BRC/U networks to disseminate our plans more widely
• Review the plan annually and adapt it where necessary
…Sounds pretty simple really? I’ll keep you posted.