Patient participation

Patient-centred care is a broad term that captures the vision of what health care should be: a fruitful collaboration among health-care professionals, patients and their families to ensure that any decision made is in concordance with patients’ wishes, needs and preferences.1 To this end, patients should be provided the education and support they need to contribute substantially to decisions about their care. Patient participation is an indispensable aspect of patient-centred care. It involves patients, health professionals, researchers and policy makers working concertedly at various levels across the health-care system: direct care, organizational design and governance, and policy making; with the twofold aim of improving health and health care. Arguments to support the value of patient participation include democratic grounds: people who gain benefits or suffer the consequences of certain decisions ought to have a say in the process.2 Moreover, the effectiveness and efficiency of health-care systems may increase, as patients may offer solutions in accord with their preferences, thereby preventing errors and saving costs.3 Converging evidence suggests a positive influence of patient participation in advancing quality and patient safety,4 containing health-care costs5 and improving population health outcomes.6 In this context, patients participate not only in decisions regarding their own health and treatment (microlevel), but also in decision making that pertains to organizations and local health authorities (i.e. mesolevel) as well as to the national parliament (i.e. the macrolevel). Health Expectations is committed to promoting research at all three levels by publishing high-quality manuscripts and which employ a diversity of robust methods. We encourage submissions from around the world. In the present issue, a range of topics are explored using a variety of methodologies, and manuscripts come from both developed and developing countries. Starting with research on the microlevel, patient–physician communication is the focus of the majority of articles in the present issue. Ilan and Carmel, from the Ben-Gurion University of the Negev in Israel, have developed a tool for evaluating patient's communication patterns, when they interact with physicians. The scale, which has been validated in patients with cancer, demonstrates good reliability and validity and facilitates identification of the facets which are not openly addressed by physicians. Thus, the authors suggest that it can foster open and collaborative patient–physician communication, especially in the context of severe illnesses. Similarly, Abdul-Razzak and colleagues explore patients’ perspective on physician behaviours during end-of-life communication and highlight patients’ need for truthful and straightforward exchange of information; however, they stress the importance of clinicians assessing patients’ readiness to assimilate this type of information. Locock and Byolan report a study in which they explored the ways biosample donors conceptualize their donation and whether or not they regard it as a ‘gift’. Their analysis suggests that donors are positive about donating biosamples on the grounds of reciprocity and solidarity, but the term ‘gift’ should be avoided when clinicians communicate with patients, and governance bodies set discourses around donation. Moving to the delivery of treatment and the configuration of health-care services, Reece and colleagues explored adolescents’ experience of living with obesity and their views about treatment. Findings indicate that while young people associate their weight gain with their own behaviours and emotions, they anticipate the treatment programme to resolve their weight problem. This contradiction should be addressed in an effective long-term weight management intervention. Similarly, in the realm of alcohol use disorders (AUD), McCallum and colleagues investigated patient experiences of AUD treatment with respect to continuity of care, treatment need and patient satisfaction. Their findings indicate that patients seek supportive relationships with others, their involvement in decision-making, specialized and holistic approaches to care and a non-judgmental treatment environment. In this area of inquiry, another study of the present issue endeavours to shed light on the definition and conceptualization of continuity of care in mental health services. Sweeny and colleagues have recorded noteworthy similarities and differences between the patient and the professional perspective on continuity of care; however, they highlight the importance of incorporating both viewpoints in the conceptualization of the term. From the community perspective, a study by Mwaka and colleagues illuminates lay perceptions and degree of awareness about the risk factors and symptoms of cervical cancer in Gulu, Uganda. They suggest that the general population is well aware of the symptoms and risk factors of cervical cancer, with the exception of Pap smear and vaccination of young girls as preventive measures. Thus, awareness-raising activities should integrate these modes of prevention. Mawn and colleagues explored adolescents’ perceptions about involving them into research activities and suggest that their limited involvement can be attributed to a dearth of related opportunities rather than lack of motivation. In the wider context, Abelson and colleagues have developed and tested a tool for evaluating public and patient engagement (PPE) in health system organizations from three perspectives: public and patient participants, sponsors and managers of PPE projects and organizational leaders responsible for PPE. Similarly, the development of a collective learning framework that would facilitate public and stakeholder engagement in health is the focus of the paper by Khodyakov and colleagues. In particular, the collective learning framework may increase the quality of decision making, by enabling policy makers to solicit and integrate input from patients, caregivers, health-care professionals and researchers. Finally, the paper by Bodolica and colleagues argues for the imperative need of formulating a unified governance framework that would bridge the macro-(hierarchical) and micro-(relational) governance initiatives in health-care settings. In particular, the macrolevel institutional norms that guide clinical practice and the microlevel interaction between the patient and the physician should be developed hand in hand, rather than separately, with high levels of flexibility and adaptability. The manuscripts in this edition of HEX suggest that both the general and the patient population are eager to participate in various aspects of decision making in health, given the opportunity to do so. A growing body of literature has begun to bolster patient participation in the microlevel, as evident by the topics of the present issue, as well as at the mesolevel. It seems that research and policy efforts on patient participation at the macrolevel are scarce. For patients to take on an active role in high-level decision making, research is needed in this area, and we, at HEX, would encourage our readers to submit manuscripts reporting such activity

Business · Corporate governance · Health care · Parliament · Patient participation · Political science · Politics · Public health · Public relations · Medicine · Mental Health and Patient Involvement · Nursing · Patient Satisfaction in Healthcare · Patient-Provider Communication in Healthcare · Psychology · Health Policy

• Comparison of patient perceived primary care quality in public clinics, public hospitals and private clinics in rural China

  Open Access•Wenhua Wang, Elizabeth Maitland et al.•International Journal for Equity…•2017

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• Patient participation in dialysis care—A qualitative study of patients’ and health professionals’ perspectives

  Open Access•Liselott Årestedt, Caroline Martinsson et al.•Health Expectations•2019

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• Effectiveness of strategies for informing, educating, and involving patients

  Open Access•Angela Coulter, JO ELLINS•BMJ•2007

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