Patient Participation Awareness Week 2022

In recognition of National Patient Participation Week, OHE wants to acknowledge the integral role that patients and the public play in how decisions are made in the National Health Service (NHS) and other health systems. This includes decisions about their own care but also decisions that can affect how and which services are provided to other patients or the wider population.

Patient feedback in primary care on the provision and quality of the care they receive and the treatments that are offered to them is integral to maintaining and improving the quality of healthcare systems. Understanding the diverse needs and perspectives of patients can help to inform healthcare decision-making and contribute to the transparency, accountability, and credibility of resource allocation across health systems. One such mechanism in the UK is Patient Participation Groups (PPGs): a group of patients, carers, and Primary Care staff who meet to discuss practice issues and the patient experience in order to improve the quality of the service.

Beyond primary care, patient and public participation in health system decision making helps to ensure that decisions about how to organise the healthcare system, and which treatments to fund, are as fair and as transparent as possible. Too often, however, HTA processes see patients primarily as study subjects rather than empowering them to play a meaningful role in decision-making processes. OHE supports and advocates for a greater role for patients, carers, and the public in HTA decision-making.

OHE has been involved in a number of projects that demonstrate the value of greater patient and public participation around health system decision making. A recent patient preference study found that people with experience of infertility were willing to forego some chance of a successful pregnancy to have a greater degree of shared decision-making in their treatment, highlighting opportunities to for patient input improve the process of treatment. Likewise, a willingness-to-pay study showed that the public across 8 countries was willing to contribute to a national infertility treatment programme, highlighting the opportunity for public preferences to shape policy. OHE is also involved in an ongoing study of patient preferences in the treatment of leukaemia. Recognition of patient preferences over their leukaemia treatment is often seen as secondary to maximising survival, and this study seeks to understand the priorities of different subgroups of persons with leukaemia. Such an understanding can help to ensure that healthcare is organised in a way that can address the full range of patient priorities.