Involving patients in health care: the process matters

Health Expectations is committed to publishing original research related to the concept of patient and public involvement in health care and health policy. Its international focus draws submissions that address this issue from array of perspectives: cultural, methodological and conceptual. This issue of HEX includes papers from the UK, Australia, the United States, China and Turkey. Each addresses the broad area of public involvement in health care in a different way. A theme running through several of the manuscripts in this issue of HEX relates to the importance of understanding the process of involving patients in their own care.

In 2001, the Institute of Medicine first identified patient‐centred care as one of the key elements of high‐quality health care.1 Since then, the field has struggled to identify exactly what constitutes ‘patient‐centred care’. Yet there has been consensus that achieving patient‐centred care requires that patients be involved. The papers in this issue of HEX contribute to our understanding of how the process, and not just the outcome, of patient involvement in care is important for ensuring patient‐centred care.

In their scoping review, Conklin and colleagues sought to evaluate the extent of peer‐reviewed evidence for the impact of public involvement in health care and health policy. Finding 19 articles to be eligible for this review, the authors concluded that the evidence for the outcomes of involving the public in health care/health policy remains limited. This review underscores the need for further work to understand how involving the public in health care translates into outcomes for health care and health policy. These authors further contend, however, that focusing only on outcomes may obviate the potential benefit of involving the public in health care simply because this is a positive thing to do. In other words, regardless of whether not involving the public in health care translates to measureable positive outcomes, patients and the public may still benefit from the process of being involved in their own care.

This contention is supported by another manuscript in this issue from Rathert and colleagues who assessed results from patients staying overnight at 142 U.S. hospitals to determine patient perceptions of a conceptual model of patient‐centred care. The authors found strong support for their theoretical model, and that patient‐reported positive experiences with care coordination and physical comfort were strongly associated with more positive ratings of patient‐centred care. Although this study did not directly assess the outcomes of patient experiences with, or involvement in, their health care, it lends credence to the assertion that there is benefit to simply involving patients in the process of their care experience.

An interesting approach to evaluating the process of patient engagement in health care was undertaken by Wolff and colleagues who observed the primary care visits of 78 patients who were accompanied by a family member. These authors concluded that companions facilitated more patient engagement in visits, through increasing patient question asking, decreasing patient passive agreement and extending the length of the visit. They suggest interventions could consider integrating family members into the delivery of patient‐centred care. This study further supports that the process of care – in this case a process that includes both the patient and a family member – is key to involving patients in their care.

Two studies in this issue look specifically at risk‐taking behaviours among older adults and at how providing more patient‐centred care may mitigate these behaviours in very different populations. Liu and colleagues used a grounded theory approach with in‐depth interviews to assess attitudes towards exercise among older Chinese immigrants to the UK. They found that cultural factors may contribute to Chinese elders undertaking more risky exercises and concluded that physicians may need to attend more closely to the attitudes of cultural subgroups. Haines and colleagues also conducted in‐depth interviews with rehabilitation inpatients, their caregivers and providers. The authors found that some adults are more likely to take risks as part of rehabilitation and that providers and caregivers play a central role in managing these behaviours.

Overall, this issue of HEX includes a rich set of manuscripts that together underscore the importance of the process of involving patients in their own health care. The manuscripts identify key issues that need to be considered, including cultural backgrounds, the role of family in supporting patients, and all stress the importance of understanding the attitudes and perceptions of patients regarding their own care experiences. While the evidence for the outcomes of involving patients in their care may be scarce, as summarized by the Conklin scoping review, the papers in this issue clearly demonstrate there is a benefit from the process of doing so.