Participatory research in health promotion: a critical review and illustration of rationales.

In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons-or rationales-so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.

Enthusiasm for patient and public involvement in health promotion research is growing. However, it often remains unclear why this involvement is being organized. This lack of clarity makes it difficult to implement such participatory research and to evaluate its added value. We searched for reasons that were given for starting patient and public involvement in research. We found five different reasons. The first is the right of all citizens to have a say in research that affects them. The second is the right of individuals to demand the best research. The third is the desire to involve and empower marginalized groups. The fourth aims to improve the quality of the knowledge generated by the research. The fifth is to achieve more effective and efficient research. Together, these reasons may help researchers get more clarity about why patients or the public should be involved in their studies. This may in turn help to define realistic purposes, design a good participatory process, and conduct appropriate evaluations. All in all, using these five reasons as a frame of reference might lead to a better understanding of what good participatory research in health promotion should look like.

Gaining 'clarity through specificity' in invited patient participation: A case study of a multifaceted participatory practice in the Netherlands.

Patient participation is a highly valued principle. Yet, it remains difficult both to achieve it and to assess its added value, as participation is often started without much clarification of what it means or aims to do. In theory, patients may be invited to participate for reasons of democracy, empowerment, knowledge integration and instrumentalism. By making these rationales explicit in a participatory practice in the Netherlands, we aimed to contribute to the long-needed 'clarity through specificity' in participation. Apart from the rationales, our analytic framework included dimensions of the participatory process, reflected by questions like 'Who participates?', 'In what?' and 'With how much control?' We used this framework to conduct and analyse semi-structured interviews (n = 51) with patient participants (20), professionals (14) and researchers (17). We found that the participatory practice included all rationales and that the actual manifestation of an intended rationale very much depended on the design of the dimensions of the participatory process. We conclude that invited participation may gain in clarity by making explicit the rationales for participation. If put at the centre of attention, and made the leading factor in the design of the dimensions of the participatory process, explicit rationales may support the realisation of participation in practice and prevent it from resulting in mere window-dressing.

Patients want to be seen: The top 3 information needs of patients with inguinal hernia.

BACKGROUND: Good patient information has shown to improve surgical outcomes. In this study we explore what kind of pre-surgical information patients need and if the provision of a 360˚ video of a surgical procedure can be of added value to the information provided by the hospital. METHODS: An explorative qualitative study using semi-structured interviews on information needs was conducted among 17 inguinal hernia patients to gain more insight in the patients' present surgical information needs. Patients either were planned to receive or already had received a surgical procedure. Questions were asked about the current information provision and, after being shown a 360˚ video of the surgery, whether this would be of added value. RESULTS: Of the total group of 17 patients (mean age 56, interquartile range 45-64) 16 were male and one was female. Most had no previous experience with virtual reality (14/17), already had undergone a surgical procedure (11/17). Patient information needs were all about "seeing" which can be viewed from three different perspectives [1] being seen as a unique person in the treatment process, [2] being seen as a partner, and [3] seeing is understanding. Patients wanted the contact with the doctor to be more personal, with the possibility to see the anesthetist in person, the surgeon to see their wound in the recovery phase, and to receive personal answers to questions about their specific situation. Patients found the 360-video not fearsome, and believed that visual content could be beneficial as it appeals more to their imagination than written or oral information and increases their understanding. It also provided them with a better understanding of their treatment options, their pre-, peri-, and post-surgical procedures and identification of the cause of post-operative side effects. CONCLUSION: To address patients' information needs, complementary tools or services are needed that increase personal contact as well as tailor it to individual patient's needs. Even though video-apps are a partial alternative, hospitals should still offer patients the possibility of having face-to-face meetings with physicians as this is highly valued by patients and leads to increased trust in physicians' performance.