It’s all too easy to speak to a patient or carer just to tick a box on a grant proposal, but meaningful involvement is about more than a box-ticking exercise. It’s about shifting the traditional paradigm of patients in research, one in which patients are passive participants, to one in which they are fully involved as expert contributors who have a sense of ownership in research outcomes.
Arnstein’s Ladder of Citizen Participation
No discussion of PPI is complete without reference to Arnstein’s Ladder. In her seminal paper “A Ladder of Citizen Participation”, published in 1969, Sherry Arnstein wrote, "There is a critical difference between going through the empty ritual of participation and having the real power needed to affect the outcome of the process." Arnstein’s Ladder is from the Department of Housing and Urban Development in the 1960s, but just as applicable to PPI discussions today.
Climb to the next step, and while this progression has the semblance of patient participation, it is without any power to ensure that their views are acted upon. It’s what RA patient blogger, Annette McKinnon describes as, “the way in which patients are being used as tokens and to help tick the right box. Where is the attitude that patients are part of the team in healthcare, that we are partners? Why are we always asked to participate inside a predetermined frame?”
We want to move beyond this step toward the top of the Ladder, the point at which patients are actively partnering with researchers to set the research agenda. Patients and their carers are experts in how a condition affects their lives. Learn from them. For who better than the patients (and their carers) themselves know the research outcomes that matter most to them?
Let Patients Frame The Question
The exponential rise in research output has seen a decline in quality and mounting concern about high levels of waste, bias, inefficiency and error. To quote Sarah Chapman of Cochrane UK (@UKCochraneCentr), “Knowing what matters most is vital for good stewardship of our finite resources to fund research, ensuring that work goes into seeking answers to questions that patients most want answered.”
We’ve reached a turning point in the development of patient and public involvement in research. We must change our understanding of the role of the patient in achieving healthcare’s potential. To quote melanoma patient advocate, Kay Curtin, “This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.”
When we not only speak to the value of PPI, but also prove its worth is the point at which we will unleash the full potential of patient and public involvement in research and ultimately bring about better outcomes in patient care. My challenge to you is to step into this opportunity, embrace it, and act upon it. I believe in doing so, your research will be better for it and patient outcomes will improve correspondingly.
Principles Into Practice: Co Design in Healthcare