The PPE Collaborative engages in a wide range of research and consultation activities aimed at supporting high-quality engagement in health research and health systems and policy decision making. We work with governments, health system organizations, citizen and patient partners and researchers provincially, nationally and around the world. This page outlines some of the larger PPE Collaborative projects that are currently underway and/or have been completed. Our work falls into three main categories: Developing frameworks, tools, and measures for supporting and evaluating PPE; evaluating PPE in health system decision making and research and, eliciting public and patient values on various health policy topics.
The Canadian Patient Partner Study (CPPS) aims to gain an in-depth understanding of the patient partner and advisor role as an emerging resource to the Canadian health system. Our work will include: i) a synthesis of empirical and theoretical literature about patient partner and advisor roles; ii) a survey of patient partners and advisors from across the country; and, iii) in-depth interviews to explore in more detail the motivations and experiences of patient partners and advisors and the partner organizations they join. Findings from these research phases will be used to generate an in-depth understanding of the patient advisor/partner role and its prospects for contributing to health system decision making and policy in Canada. The PE Collaborative has partnered with researchers, patient partners and patient engagement professionals from the Nova Scotia Health Authority, the Patient Advisors Network, University of Calgary and University of Toronto.
The PPE Collaborative is working with the Ontario Ministry of Health to support high-quality patient engagement across the Ontario health system. We have convened the “Evaluating Patient Engagement Working Group” to develop a framework and measures to evaluate the impact of patient engagement. The Working Group includes patient partners, researchers and individuals working at various levels within the Ontario health system. In addition, we are working with the Ministry to evaluate patient engagement within the emerging Ontario Health Teams (OHTs) and will support OHTs developing and implementing patient engagement plans and programs. This work is funded by the Government of Ontario through a Ministry of Health grant.
In 2018, we worked with HQO to assist with the development of measures to evaluate the impact of their patient partnering work. This project included a review of the published and grey literature to identify potential measures, collaboration with some of HQO’s patient partners and staff to refine the measures under consideration, and recommendations for a set of measures that could be used to evaluate the impact of patient partnering within their organization and beyond. HQO is currently implementing the newly created measures.
The PPEET was developed by the PPE Collaborative to serve as a common evaluation tool for health system organizations across Canada and internationally who are engaging the public and patients in their work. The tool was updated in summer 2018 following an implementation study evaluating the feasibility of the tool across a variety of health system organizations in Ontario. More information about the PPEET is available here.
Download the PPEET
The PPE Collaborative partnered with the Centre for Excellence on Partnership with Patients and the Public (CEPPP) to develop the Public and Patient Engagement Evaluation Toolkit. The toolkit is an electronic resource designed for practitioners of the health sector, produced after the completion of a rigorous systematic review of patient and public engagement evaluation tools. The toolkit includes a wide range of tools to assist with the evaluation of public and patient engagement initiatives, both in health research and in health care.
The PPE Collaboration worked in partnership with the Ontario Health Technology Advisory Committee (OHTAC) and Health Quality Ontario (HQO) to develop a comprehensive framework for involving the public and patients in health technology assessment. The development of the framework involved a synthesis of international practice and published literature, a dialogue with local, national and international stakeholders, and the deliberations with the patient engagement sub-committee of OHTAC. This work informed the development of HQO's Patient Partnering Framework.
This work was awarded the 2017 Egon Jonsson Award at a ceremony in Rome on June 2017 in recognition of excellence in contributions made to the International Journal of Technology Assessment in Health Care. The award is given annually by Health Technology Assessment International (HTAi) to the authors of an outstanding paper in the society's official journal published over the past year.
The role of patient advisors in research is quickly expanding as researchers identify the value in working with individuals who have lived experiences and knowledge of the health systems and conditions that they study, and as funding agencies begin to require partnerships with patients. Through partnerships with research groups and networks, the PPE Collaborative has evaluated patient engagement efforts within research projects and networks.
The CIHR Institute of Musculoskeletal Health and Arthritis' (IMHA) PERA program is an evolution of IMHA's Research Ambassador group which started in 2003. The PERA team, which began in 2020, will meet 2 - 3 times per year to provide insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities. The PPE Collaborative is conducting a process evaluation of the PERA team to monitor its implementation and allow for ongoing improvement of the program.
The Chronic Pain Network (CPN) is a CIHR SPOR-funded pan-Canadian collaboration of patients, researchers, healthcare professionals, educators, industry and government policy advisors to direct new research in chronic pain, train researchers and clinicians, and translate findings into knowledge and policy. The PPE Collaborative is evaluating the patient engagement component of this network using a combination of key informant interviews, document reviews, and surveys.
The iCAN-ACP Project is a 3-year national study that aims to introduce and evaluate advance care planning tools with the aims of encouraging more, earlier and better conversations between older adults, families and the health care team about preferences for end of life care that fits with individuals values. The project, funded by the Canadian Frailty Network, brings together 32 investigators from 16 universities, five international collaborators and 42 partner organizations. The Project has included patient partners in their work. The PPE Collaborative evaluated the patient engagement component of the iCAN-ACP study.
As the shift to oriented research (POR) continues, we need to assess whether we are achieving our goals and identify the results of this new way of doing research. The PPE Collaborative has partnered with the Chronic Pain Network to evaluate one of its funded research projects, the iCanCope with Pain project. Using an evaluation case study approach we will assess how POR principles shaped the research project and aim to understand the uptake, scale and spread of research results and outputs to knowledge users to understand how the project contributed to health system impacts. This work is funded through a CIHR Patient Oriented Research Impact Assessment Operating Grant.
A key focus of the PPE Collaborative's research is on exploring and elucidating citizen values on health policy topics. Deliberation methods are commonly used in these types of studies where citizens from a variety of backgrounds come together to discuss and seek common ground on how to address challenging health policy topics. As part of their deliberations, participants consider evidence shared on the topic while reflecting on personal values and trade-offs between different scenarios put forward. The PPE Collaborative has studied a variety of topics using this approach. Some of these studies are highlighted below.
In partnership with the McMaster Health Forum and the Canadian Centre for Applied Research in Cancer Control, the PPE Collaborative was awarded funding from the Canadian Partnership Against Cancer to engage Canadians in order to better inform decision-making about cancer drug funding. Six public deliberations were held across Canada to develop recommendations to guide cancer drug funding decisions.
The PPE Collaborative formed the CRPHT to inform the work of the Ontario Health Technology Advisory Committee (OHTAC) at Health Quality Ontario (HQO). The CRPHT was formed to elicit public and citizens' societal and ethical values that should guide OHTAC in developing its recommendations on specific topics. The panel included 14-members - one from each of Ontario's Local Health Integration Networks (LHINs) to allow for geographic representation - and selected to ensure diversity in age groups and gender.
Five structured deliberations were held on a variety of topics relevant to the health technology assessments (HTAs) OHTAC had underway. The results of the deliberations were shared with OHTAC and usefully informed HTA decisions.
In recent years, emerging evidence on mammography screening has questioned the relative benefits and risks of screening average-risk women for breast cancer. This has led to an increased emphasis on informed decision-making as many screening guidelines acknowledge that there is no clear 'right' or 'wrong’ decision about mammography screening and women need to make screening decisions based on their own values. Little attention has been paid to directly eliciting women's perspectives in this area. Little attention has been paid, however, to women's perspectives on mammography screening and informed decision-making. This project aimed to address that gap through a series of citizen deliberations and a population-level survey of screen-eligible women.
The purpose of the Transformation Project is to measure and improve the performance of primary care in Canada. Dr. Julia Abelson partnered with Dr. Sharon Johnston from the University of Ottawa to lead one of four studies within the pan-Canadian project. Which explored the best methods for reporting the results of primary health care performance to different groups of stakeholders; providers, patients and decision-makers. To achieve this, six deliberative dialogues were held across three provinces (Ontario, British Columbia and Nova Scotia).