Patient and public involvement in health technology assessment: update of a systematic review of international experiences.

OBJECTIVE: To summarize current evidence on patient and public involvement (PPI) in health technology assessment (HTA) in order to synthesize the barriers and facilitators, and to propose a framework to assess its impact. METHODS: We conducted an update of a systematic review published in 2011 considering the recent scientific literature (qualitative, quantitative, and mixed-methods studies). We searched papers published between March 2009 (end of the initial search) and December 2019 in five databases using specific search strategies. We identified other publications through citation tracking and contacting authors of previous related studies. Reviewers independently selected relevant studies based on prespecified inclusion and exclusion criteria. We extracted information using a pre-established grid. RESULTS: We identified a total of 7872 publications from the main search strategy. Ultimately, thirty-one distinct new studies met the inclusion criteria, whereas seventeen studies were included in the previous systematic review. PPI is realized through two main strategies: (i) patients and public members participate directly in decision-making processes (participation) and (ii) patients or public perspectives are solicited to inform decisions (consultation or indirect participation). This review synthesizes the barriers and facilitators to PPI in HTA, and a framework to assess its impact is proposed. CONCLUSION: The number of studies on patients or public involvement in HTA has dramatically increased in recent years. Findings from this updated systematic review show that PPI is done mostly through consultation and that direct involvement is less frequent. Several barriers to PPI in HTA exist, notably the lack of information to patients and public about HTA and the lack of guidance and policies to support PPI in HTA.

Health professionals and patients' perspectives on person-centred maternal and child healthcare in Burkina Faso.

CONTEXT: The person-centred approach (PCA) is a promising avenue for care improvement. However, health professionals in Burkina Faso (hereafter referred to as caregivers) seem unprepared for taking into consideration patients' preferences and values in the context of healthcare provision. OBJECTIVE: To understand the meaning attributed to PCA in the Burkina Faso context of care and to identify the challenges related to its adoption from the perspective of caregivers and women service users (hereafter referred to as patients). METHODS: An ethnographic qualitative research design was used in this study. We conducted 31 semi-directed interviews with caregivers and patients from Koudougou (Burkina Faso) healthcare facilities. We also carried out direct observation of consultations. Data thematic analyses are based on the person-centred approach analysis framework. RESULTS: According to the caregivers and patients interviewed, the PCA in maternal and child healthcare in Burkina Faso includes the following five components used in our analytical framework: i) pregnancy follow-up consultations extend beyond examining physical health issues (biopsychosocial component), ii) healthcare professionals' mood affects the caregiver-patient relationship as well as care delivery (the healthcare professional as a person), iii) patients expect to be well received, listened to, and respected (the patient as a person), iv) healthcare professionals first acknowledge that both themselves and patients have power, rights but also responsibilities (sharing power, rights and responsibilities of professionals and patients), and v) healthcare professionals who are open to involving patients in decision-making about their care and patients asking to have a say in the organization of services (therapeutic alliance). Implementing each of these themes comes with challenges, such as i) talking about health problems in the presence of other women, especially those related to sexuality, even though they are common to parturient women (biopsychosocial component); ii) offering psychotherapy to healthcare professionals (healthcare professional as a person); iii) taking into consideration patients' cultural and linguistic differences (the patient as a person); iv) raising awareness among patients about their right to ask questions and healthcare professionals' duty to answer them (sharing power, and rights and responsibilities of professionals and patients); v) accepting the presence of birth attendants while avoiding traditional practices that are contrary to scientific recommendations (therapeutic alliance). CONCLUSION: Despite some context-specific particularities, the PCA is not new in the context of health care in Burkina Faso. However, its implementation can pose a number of challenges. There is a need to train healthcare professionals with a view to being sensitive to these particularities. This may also require organizational adjustments so as to create the physical and sociocultural environments that are conducive to taking into account the patient's perspective.

Collaboration Between Researchers and Knowledge Users in Health Technology Assessment: A Qualitative Exploratory Study.

BACKGROUND: Collaboration between researchers and knowledge users is increasingly promoted because it could enhance more evidence-based decision-making and practice. These complex relationships differ in form, in the particular goals they are trying to achieve, and in whom they bring together. Although much is understood about why partnerships form, relatively little is known about how collaboration works: how the collaborative process is shaped through the partners' interactions, especially in the field of health technology assessment (HTA)? This study aims at addressing this gap in the literature in the specific context of HTA. METHODS: We used a qualitative descriptive design for this exploratory study. Semi-structured interviews with three researchers and two decision-makers were conducted on the practices related to the collaboration. We also performed document analysis, observation of five team meetings, and informal discussion with the participants. We thematically analyzed data using the structuration theory and a collective impact framework. RESULTS: This study showed that three main contextual factors helped shape the collaboration between researchers and knowledge users: the use of concepts related to each field; the use of related expertise; and a lack of clearly defined roles in the project. Previous experiences with the topic of the research project and a partnership based on "a give and take" relationship emerged as factors of success of this collaboration. CONCLUSION: By shedding light on the structuration of the collaboration between researchers and knowledge users, our findings open the door to a poorly documented field in the area of HTA, and additional studies that build on these early observations are welcome.

Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users.

BACKGROUND: The literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres. These units represent a unique opportunity for increased patient involvement in HTA at the local level. Our project will engage patients in an assessment being carried out by a local HTA team to assess alternatives to isolation and restraint for hospitalized or institutionalized adults. Our objectives are to: 1) validate a reference framework for exploring the relevance and applicability of various models of patient involvement in HTA, 2) implement strategies that involve patients (including close relatives and representatives) at different stages of the HTA process, 3) evaluate intervention processes, and 4) explore the impact of these interventions on a) the applicability and acceptability of recommendations arising from the assessment, b) patient satisfaction, and c) the sustainability of this approach in HTA. METHODS: For Objective 1, we will conduct individual interviews with various stakeholders affected by the use of alternatives to isolation and restraint for hospitalized or institutionalized adults. For Objective 2, we will implement three specific strategies for patient involvement in HTA: a) direct participation in the HTA process, b) consultation of patients or their close relatives through data collection, and c) patient involvement in the dissemination of HTA results. For Objectives 3 and 4, we will evaluate the intervention processes and the impact of patient involvement strategies on the recommendations arising from the HTA and the understanding of the ethical and social implications of the HTA. DISCUSSION: This project is likely to influence future HTA practices because it directly targets knowledge users' need for strategies that increase patient involvement in HTA. By documenting the processes and outcomes of these involvement strategies, the project will contribute to the knowledge base related to patient involvement in HTA.