At the Oxford Biomedical Research Centre (BRC), we strive to involve the public, who may also be patients and their carers, in our research at all stages. It is only in this way that we can be sure that what we do matters to and is acceptable to them.
Our work is guided by PAIR (Patients Active in Research), a group that includes patients and staff members. We worked closely with this group and other partners in the region and further afield to agree a strategy for patient and public involvement (PPI) for the BRC (pdf) and its related Biomedical Research Unit (BRU) to 2017.
In devising this strategy our aim is to focus on heeding best practice in PPI where it is known while developing activities to help our research themes deliver their aims. Furthermore, recognising the huge and fast-growing world of PPI, we focus on areas not covered by others while building new partnerships.
The strategy details plans for:
- Strategic Partnerships – including – crucially – weaving PPI through our work with the drug and biotech industries.
- Developing PPI across the research cycle.
- The meeting point of involvement, engagement and participation – including the PPI website as above.
- Review, monitoring and governance of PPI.
- Sharing good practice, knowledge, skills, resources. *
- Growing the evidence base for what works in PPI.
Engagement activities set out in the strategy are helping to ensure that patients seen within our hospitals know about the research we do – from trials of new treatments to studies designed to help find out the causes of and ways to prevent disease – and how they can take part.
But crucially, the strategy is ensuring they also participate in our work across the research cycle, from setting priorities for new research to helping us monitor studies, tell other patients about them and communicate new research findings to other patients and the public.
In summer 2015 we finalised the payment policy that enables us to offer payment to all patient and public members of PAIR (see PAIR PPI payment policy). We will in due course re-advertise PAIR membership so that those who might have been deterred from applying when we were unable to offer payment can do so now. We are also working with themes and working groups across the BRC and BRU to ensure that they too budget for PPI payments and are able to act to a similar policy once they have funds in place.
* As set out in this part of the strategy: “We will work to the principles of the AllTrials campaign, calling for greater openness and transparency in clinical trials and launch two parallel activities: analysis of trials within the BRC/U since they began and ascertaining how best to ensure full publication of all current and future research; work with researchers and patients to ensure registered trials are accompanied by good lay summaries.” We have now published the results of this analysis in BMJ Open (bmjopen.bmj.com/content/6/3/e009285) and in this Synopsis of how OCTRU has implemented the BRC recommendations (pdf) in which you can read a report from one of our six clinical trials units which follows up on the Directors’ recommendations contained in this audit.