BackgroundPatient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.ObjectiveSystematically review and appraise evaluation tools for patient and public engagement in research and health system decision making.MethodsWe searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject‐matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability.ResultsIn total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public.ConclusionA growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.
If we are serious about involvement, we need to be equally serious about evaluation
Patient and citizen engagement is taking root in a number of healthcare organizations. These initiatives show promising results but require a supportive environment to bring systemic and sustainable impacts. In this synthesis article, we propose an ecosystemic perspective on engagement in health, outlining key elements at the individual, organizational and systemic levels supporting reciprocal and effective relationships among all partners to provide conditions for the co-production of health and care. We argue that growing a healthy engagement ecosystem requires: (1) building local and national "hubs" to facilitate learning and capacity building across engagement domains, populations and contexts; (2) supporting reciprocal partnerships based on co-leadership; and (3) strengthening capacities for research, evaluation and co-training of all partners to support reflective engagement practices that bring about effective change. An Ecosystemic, Reciprocal Perspective on Patient and Citizen Engagement Relationships Ecosystems are communities of individuals interacting with their environment (Gurevitch et al. 2002: 522). Ecosystems are "holonic structures": they are made of entities that are a whole and a part of a larger system at the same time (e.g., atoms, cells, organisms, planet), with the levels dynamically interacting with one another (Koestler 1967: 48). In healthcare, individuals are embedded within the healthcare organizations and systems they interact with (Mella and Gazzola 2017). An ecosystemic perspective on patient and citizen engagement reminds us that healthcare, in its essence, is about relationships between people. This perspective also highlights the idea that these relationships
Background Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Objective This project aims to build a national adaptable framework for the evaluation of PPE in research, by: Building consensus on common evaluation criteria and indicators for PPE in research; Defining recommendations to implement and adapt the framework to specific populations. Methods Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. Discussion The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.
Context The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease. Objectives (i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective. Methodology All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis. Results Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change. Conclusion The combination of methods to collect and integrate patients’ knowledge and patient associations’ perspectives helped develop a comprehensive understanding of a controversial object of evaluation.
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