Listening to patients at all levels of healthcare

The NHS is one of the UK’s top priorities. But where should the new government start? Safety of patients in the health system seems a good place to begin. Henrietta Hughes, the first patient safety commissioner, thinks that the NHS’s focus on finance and productivity is failing to improve patient safety (doi:10.1136/bmj.q1301).1 She says that the first step to improving patient safety is to actively listen to patients and to ensure such active listening is embedded throughout the health service.

Working with patients as partners is an aspiration for many individuals and institutions. But despite an ethical imperative, many examples, and growing knowledge of how to meaningfully work in partnership with patients and the public, good practice remains patchy. Many research funders now ask for a patient and public involvement plan to be included in research applications. Dana Lewis—who has type 1 diabetes and co-developed and tested a closed loop artificial pancreas—is helping the shift from patients being passive recipients of healthcare to leading research and policy (doi:10.1136/bmj.q1406).2

But the value of patient partnership remains hard to quantify. James Munro, chief executive of Care Opinion, says that staff view patient feedback as something that should be done, although they often think it is of little tangible use (doi:10.1136/bmj.q1243).3 Yet patient feedback can be predictive of hospital level mortality and can better reflect performance than reporting by staff. Munro calls for staff to embrace the value that patient feedback offers.

For many patients, access to their own health records is a priority, but progress on achieving this is mixed despite many national initiatives and commitments (doi:10.1136/bmj.q1481).4 Denmark, Estonia, Korea, and the United States, for example, are mandating access. The benefits of access are clear and outweigh the risks. In the UK, too many people are struggling to get access to their full medical records (doi:10.1136/bmj.q1385).5

We all have a role in changing the ad hoc, “nice to have” nature of patient partnership and turning it into a deeply rooted principle of healthcare. Medical journals provide a place where standards for research and clinical practice are debated. After 10 years of The BMJ’s patient and public partnership strategy, most medical journals have not joined us with a similar commitment (doi:10.1136/bmj.q1463).6 Working in partnership with patients is hard. It requires dedicated effort and funding, but we think that it results in a better journal, and for those who have adopted a patient partnership approach, the impact is clear (doi:10.1136/bmj.q1459).7 We hope that others will be encouraged to launch their own initiatives.

But what do patients and the public really want from their health service? Many want to be seen as a person beyond their health condition—they want to be heard by health professionals (doi:10.1136/bmj.q1444).8 Patients want to know that their insights and worries are being taken seriously by health professionals who think beyond treatments and the care delivered in a clinical setting (doi:10.1136/bmj.q1482).9 Peer support groups (doi:10.1136/bmj-2022-070443)10 and access to the information they need to make decisions are vital to helping patients feel more involved and better supported (doi:10.1136/bmj.q1284).11

WHO’s resolution on social participation also provides a clear message: patients, the public, and communities must be involved in all aspects of care if we are to deliver the best outcomes for patients in the safest way possible (doi:10.1136/bmj.q1460).12 The message is simple, patients must always have a seat at the table when in medical research and healthcare decision making. It’s a principle that we adopted in the production of this theme issue, thanks to The BMJ’s patient partnership team and international patient advisory panel.

We are 10 years into our patient partnership strategy that now encompasses patient editors, patient reviewers, and an international patient panel. We cannot guarantee to always get it right, but we can guarantee an ongoing commitment to partnership with patients. A seat at every table is the minimum requirement. Success can only be achieved if patients and the public have the power to shape strategies for health policy, clinical practice, and medical research.