Patient participation in contemporary health care: promoting a versatile patient role

In contemporary health care, there has been a strong emphasis on patient centredness1, calling for revisiting the patient role. Historically, in many cultures worldwide, the relationship between the patient and the health‐care professional was grounded on a paternalistic model, where patients assumed a passive role throughout their healing process2. However, in today's definition of health care, an active role has been attributed to patients, both at the individual and at the collective level. By participating in the decision processes, patients can exercise their fundamental rights; while from the consumer perspective, they may demand quality services3. Furthermore, by taking a part in treatment and service evaluation, the patient–consumer can contribute to the improvement of the health‐care system in general4. This new vision of the patient role has been echoed in several official documents of professional bodies as well as in government policies. In bolstering this stance, the World Health Organization has underlined the necessity of encouraging an active and participatory role for patients in order to enhance their well‐being and to improve the efficiency of the health‐care system5. To this end, the inclusion of patients in health‐care decision making is a current policy imperative in many countries and health systems around the world.

In this rationale, the present edition of Health Expectations has endeavoured to assemble studies that address different facets of patient participation, cover a diversity of health conditions, employ a variety of research methods and emanate from different parts of the world. It is this multipronged approach that renders Health Expectations a journal committed to promoting critical thinking and scientific debate on all aspects of public participation in health care and policy.

The edition entails two articles which have attempted to delineate the defining features of key concepts. In particular, van Leijen‐ Zeelenberg et al. have investigated the fundamentals of patient‐centred care in otorhinolaryngology and have revealed four dimensions to prevail in participants’ narratives: (i) information; (ii) communication and education; (iii) coordination and integration of care; and (iv) respect of patients’ values, preferences and expressed needs. Similarly, by employing an evolutionary concept analysis, Millar et al. have endeavoured to add clarity on the meaning and definition of service user involvement in mental health, so as to promote fruitful discussion and mutual understanding among stakeholders. The five key attributes that emerged encompass person‐centred approach, informed decision making, advocacy, obtaining service user views and feedback and working in partnership. Interestingly, the vast majority of articles that are included in the present edition are along these lines.

The type of information, the nature of communication and the quality of support provided by health‐care professionals to patients and their families constitute the main topics for a number of articles in the present edition. Patients’ and health‐care staff's views on patient decision aids for insulin initiation in type II diabetes mellitus is the focus of a qualitative study from Malaysia. Lee et al. record positive views for both groups; however, they document different expectations with patients prioritizing practical information and awareness of how insulin might affect them. Decision aids in assisting oncology patients choose among different treatment options is the focus of a multicentred trial investigating whether they increase the feeling of subsequent regret, and especially among those with poor outcomes in term of serious side‐effects. In this study, van Tol‐Geerdink et al. reported that the use of decision aid tended to lower regret in patients experiencing dire side‐effects. Apart from decision aids, the use of question prompts list has also been encouraged in an attempt to facilitate shared decision making. Ahmed et al. present a Delphi study for the development and validation of a question prompt list for attention deficit hyperactivity disorder; however, professionals and non‐professionals were found to hold conflicting views on information needs. These studies highlight the imperative need for continuous training of clinicians on shared decision making.

This is the conclusion also reached by Farrelly et al. who demonstrated that the Joint Crisis Plan Intervention for people with severe mental illness was only partially successful in empowering service users in decision making with clinicians in United Kingdom, as it was largely undermined by a lack of true engagement by mental health professionals. This absence of clinician engagement was also linked to poor organizational commitment. The relevance of organizational context in hindering user involvement is also raised by the qualitative study of Wright et al. These researchers showed that at points of transfer of care from community to inpatient treatment and back to the community, the voice of people with mental illness was lost largely due to contextual factors, for example reductions in inpatient beds or shortage of community mental health staff.

In an endeavour to inform clinicians, Muller et al. have investigated the psychosocial and clinical characteristics that predict decisional conflict over prenatal diagnostic testing. In their study, motivation to comply with doctor's perceived preferences and perceived disagreement with partner were found to be the strongest predictors of decisional conflict; however, clinicians can reduce psychological distress, if they manage to address effectively these concerns. Similarly, Mattarozzi et al. provide important insights into which aspects of life patients with multiple sclerosis regard as essential for their well‐being and whether these change over the course of illness. Evidence from this study can assist clinicians in health‐related decisions.

Another important area for informing clinicians pertains to patients’ expectations from treatment. In this line of enquiry, de Achaval et al. documented that patients’ expectations of time to functional recovery after total knee arthroplasty were overly optimistic and thus unrealistic; however, not all patients shared these expectations. Consistent with this, assessing patient expectations before surgery and providing them with adequate information can enhance their satisfaction with treatment outcomes post‐surgery. The importance of providing adequate and realistic information is also raised by Knapp et al. In their study, they tested the European Medicines Agency recommendations on communication side‐effects risk and concluded that the combined verbal and numerical terms resulted in risk overestimation, suggesting a change in EMA risk expressions. Patients’ expectations with regard to prescribed medicine were the focus of a qualitative meta‐synthesis by Dohnhammar et al.

Dwarswaard et al. reviewed the qualitative studies literature on self‐management support and found that patients with chronic conditions expect a paradigm shift from the traditional professional–patient relationship into a collaborative partnership. Additionally, this study highlighted the importance of social networks in self‐management support, in the form of either fellow patients or relatives. Consistent with this, it concurs with the study of Kirk et al. who employed an ethnographic approach to explore how Internet discussion groups are used by young people with cystic fibrosis and their families to support self‐care. Their research substantiated the significance of online support groups in facilitating empowerment of young people. The importance of a collaborative partnership between physicians and patients is also conspicuous in the study by Rhodes et al., who documented that from the patient perspective, safety is not a property of systems, it is personal, and it is understood in relation to the interaction between the physician and the patient.

Apart from shared decision making, patients are involved in intervention evaluation and health‐care provision. Congruent with this, Lavender et al. documented positive attitudes of a community sample towards an antenatal lifestyle programme targeting obese women. Interestingly, their results indicated that while these women were open into taking advice on their weight, health professionals were not. Likewise, Ismail et al. investigated the degree of uptake and understanding of the NHS Vascular Health Check Programme as well as patients’ experiences of behavioural change. Their results substantiate patients’ support of the programme; however, they expressed a need for further support that would enable them to stay tuned with regard to the diet and lifestyle changes required to tackle cardiovascular disease. From a different research angle, Augn et al. did not investigate patients’ views on a specific intervention programme; however, they corroborated an association between patient activation and patient‐assessed quality of care. With regard to services, Normansell et al. investigated barriers to screening sexually transmitted diseases in young people and found that fear of social stigma, lack of education on sexual health and difficulty with accessing pertinent services were the preponderant themes in participants’ narratives.

This edition also raises the importance of clinical and policymakers taking into consideration vulnerable population subgroups. Muzik et al. provide an exemplar of participatory research approach, illuminating the reasons for poor receipt of perinatal health services among teenage mothers belonging to black and minority ethnic groups. Lack of awareness, inadequacy and inaccessibility of services and a generalized feeling of mistrust and suspicion accounted for the low uptake levels. In a similar vein, another population subgroup that should attract policy attention is immigrants. Ronda et al. provide evidence for deterioration in immigrant workers’ employment situation since the outset of the crisis in Spain with ensuing disturbances in emotion regulation, sleeping patterns, quality of life and self‐rated health.

Apart from patients, research on other stakeholders has been incorporated in the present edition. Regarding prevention and early diagnosis of cancer, Sanz Barbero et al. analysed data from the Onco Barometro 2010 in Spain aiming to identify the social factors, health characteristics and cancer‐related perceptions associated with cancer information. Their work lends credence to the claim that raising awareness among the general public is not necessarily translated into better attitudes towards the disorder and its treatment and thus tailored interventions should complement existing mass media campaigns. On the same topic, but from a different angle, Green et al. investigated how general practitioners perceived their role in the early detection of cancer, as promoted by mass media campaigns in UK. Their findings indicate that GPs understand their importance in the early detection of the disease; however, they face difficulties in fulfilling their role due to growing GP demands in the NHS.

Finally, the current edition entails three articles that address simultaneously the perspectives of different stakeholders. Van der Han et al. present a framework for monitoring and evaluating patient involvement during the development of the Multidisciplinary Guidelines on Employment and Severe Mental Illness in the Netherlands. This entailed both common methods of patient involvement (e.g. patient representativeness in the guidelines development groups) and innovative ones (dialogue sessions that allowed professionals and patients to reconcile the conflicting preferences). In a similar vein, Lopes et al. aimed to understand the perspectives of selected stakeholders regarding processes of Australian Advisory Committees to involve public, patients and patient organizations as well as to identify barriers and facilitators to participation. Their findings indicate that stakeholder groups hold contrasting views with respect to what constitutes effective and inclusive patient involvement, possibly due to resonating with either technocratic or democratic conceptions of involvement. Finally, Bouwman et al. explored expectations and experiences of patients who complained to the Dutch Inspectorate and found that while they shared a common goal, that is to improve the quality of health‐care, patients’ perceptions of the complaints’ relevance differed substantially from regulators’ perceptions.

Converging evidence from the aforementioned studies substantiate the lively interest on patient participation in health care and policy. Nonetheless, more research is needed to shed light on the various aspects of this multipronged construct as well as on its underpinnings, implications and applications. Concerted efforts on the part of patients, their relatives, health professionals, policymakers, researchers and other stakeholders are essential in fostering scientific understanding and promoting high quality of care. To this end, Health Expectations has been committed in providing a multidisciplinary and international forum.