Involve the public in service design

“No decision about me, without me” is a phrase rolled out by UK politicians when describing how people should be treated by the NHS. Yet it ought to be more than rhetoric when it comes to making decisions about people’s health and the services they access.

Patients and the public can lend a very different perspective to that of experts. In September 2014, the European Medicines Agency (EMA) launched a pilot project to enable patients’ input into the discussions of its Committee for Medicinal Products for Human Use (CHMP), which informs the agency’s decisions about drug licensing. The EMA wants such risk-benefit opinions to be informed by patients’ views on the therapeutic effects of medicines and impact on quality of life. The project involves patients presenting their views to the CHMP in person; this goes beyond the written consultation processes so often employed.

The importance of seeking a patient perspective is recognised within the research community. Getting people involved in publicly funded research is a commitment of the National Institute for Health Research (NIHR), which funds NHS research initiatives in England. The NIHR requires grant applicants to describe how they have involved the public in the design and planning of their study and, if they have not, to explain the rationale.

Many people providing healthcare aim to put their patients first, but how many can say that they have involved the public when developing services in the first place?

This commitment to patient and public involvement is not new. The NIHR’s Involve programme was established in 1996. It provides resources and guidance to support public involvement in research. Involve makes clear that this involvement is not about raising awareness of research or creating a dialogue with the public; nor is it about the recruitment of research participants. It is about involving people when developing the research idea, in the design of a study, when producing lay summaries, through advisory roles, and even as part of the investigatory team.

In essence, if research is going to benefit patients, they ought to have a say from the point of its inception.

The same could be said for the development of services. In the charity sector, grant funding applications often require elements of so-called ‘co-design’ or ‘co-production’, involving service users and communities. These processes might be de rigueur; nonetheless, it is not enough to make assumptions about what service users want.

Many people providing healthcare aim to put their patients first, but how many can say that they have involved the public when developing services in the first place?

Pharmacists should consider how they can better reach out to patients before embarking on new projects. This approach must not be tokenistic. It should be enthusiastic and genuine.

The principles of patient and public involvement need to be embedded in the culture of healthcare, and encouraged at all stages of education, training and career advancement. For pharmacy, bringing patients and the public closer could help to change how the profession is perceived and, perhaps, pharmacists may learn some useful lessons about the services people want.