Patient centred care: filling in the gaps

Good communication is at the heart of shared decision making and patient centred care. What is left out or missing is just as important as what is shared.

Research by Courtney Davis and colleagues on new cancer drugs approved by the European Medicines Agency is concerning on this front (doi:10.1136/bmj-2022-073711).1 The study found that important information about the benefits of cancer drugs was not included in patient leaflets and that concerns about the reliability of evidence for these benefits were omitted in communication to clinicians and patients.

Timothy Feeney and colleagues discuss the implications of this knowledge gap for informed consent and patients’ ability to make accurate decisions about their treatment (doi:10.1136/bmj.p623).2 “Information about drugs is rarely communicated well—particularly not to patients,” they say. And although these omissions might not entirely prevent shared decision making—as patients find information elsewhere—a lot needs to be improved by working jointly with patients to fill these communication gaps.

We also need a “two way dialogue” when grappling with the delicate ethical balance of paying research participants to take part in clinical studies, writes Linda Nordling (doi:10.1136/bmj.p686).3 The ethics of how best to incentivise and compensate participants in research is a challenging area as financial payments can interfere with research outcomes. Income inequalities, coercion, and undue influence all need to be carefully evaluated. Ultimately, the most important thing, says Francesca Conradie, a South African researcher, “is that research respects the communities it tries to serve.”

One area in which healthcare professionals can advocate on behalf of their patients and help communities is the health problems arising from unhealthy housing. Sharing information and overcoming gaps in the evidence is vital. Chris Baraniuk reports on how the medical community can support their patients by writing to landlords and housing associations to highlight the health harms of living in mouldy or unsafe homes and insisting that the situation is fixed immediately (doi:10.1136/bmj.p698).4 Referrals to GPs from midwives and health visitors, who see patients at home, are crucial to making this happen. But gaps are frequent as home visits are less common, and there is no reliable way of reporting information back to GPs.

Why does it fall to the medical community to act on the detrimental health effects of poor housing? Petra Meier and colleagues discuss the lack of action on primary prevention to tackle poor health and the UK government’s reluctance “to prioritise the nation’s failing health” (doi:10.1136/bmj.p595).5 One of the ways in which governments might be persuaded to act is by “co-creating prevention strategies with those most affected by past failures,” they write.

Vaccination is one of the most successful forms of primary disease prevention. Isabelle Munyangaju and colleagues discuss falling global vaccination rates in light of the covid-19 pandemic (doi:10.1136/bmj.p627).6 Vaccination campaigns stalled because of disruption to primary healthcare services, “a failure to deliver services to the hardest to reach, ‘last mile’ populations,” and rising vaccine hesitancy caused by the spread of misinformation. The ongoing success of vaccination campaigns will rely on healthcare communities working with local populations to develop a mutual understanding and to fill knowledge gaps where good sources of information are missing, and poor evidence is shared. As with all areas of healthcare, building trust and good communication between the medical community and patients is vital.