The progress that has been made to develop patient-centred cancer care, and the important role that patient and public involvement and engagement (PPIE) have played, are described in this book. It is, however, acknowledged that these vital approaches are not fully embedded everywhere in the UK or internationally. In this chapter we explain the systematic efforts to embed PPIE in our cancer centres, the challenges we have met and the progress we have made, as a practical aid to others who are following this path. Our focus is on research, but our experience is usually relevant to service development and delivery.
The Wales Cancer Research Centre is funded by the Welsh Government and is a key part of its research infrastructure via Health and Care Research Wales. Led from Cardiff University, it has an all-Wales brief, with partners ranging across NHS Wales, Welsh universities, cancer charities and the pharmaceutical industry. The Wales Cancer Research Centre coordinates cancer research across four themes.
Preclinical research supports laboratory studies that define the mechanisms of cancer development and progression, and identify potential diagnostics, biomarkers and treatments that can be used in clinical research settings to improve patient outcomes.
Translational research brings discoveries from the laboratory bench to the bedside and from the bedside to the bench, in return.
Clinical research involves implementing the findings of preclinical and translational research and is the first stage where new therapies are brought to patients to trial.
Community research focuses on three areas of strategic importance in improving patient outcomes and experience: (1) screening, prevention and early diagnosis; (2) sharing of data; and (3) palliative and supportive care research.
We have been working towards best practice integration of PPIE across all of these diverse research areas.
When the Wales Cancer Research Centre was established in April 2015, there was discussion about whether PPIE should be a fifth theme, given the status that might imply, or should in some way encompass or infuse the four research themes. In the end it was decided that it should not be a separate entity alongside the four research themes, but should be seen as a 'golden thread' (the term used at the centre's launch) to be woven into everything the centre did. Other decisions taken at the earliest stage were as follows:
To embed a lay perspective within an evaluated and rigorous framework; the 'thread' should be led collaboratively by a lay lead and an academic lead, establishing the PPIE function as one of partnership.
To use the term 'research partner' to describe the role undertaken by lay people recruited to the project. It is a term long used in Wales in preference to other titles because it describes more precisely the willing coming together of researchers and lay people to undertake the best possible research.
Each theme should have attached ...