Patient engagement in the US and UK
In the United Kingdom and the United States, there is a focus on patient engagement in research on a national scale. Both organizations, like OSSU, are increasing their commitment to diversity, equity and inclusion in health research and health care. Here’s a brief overview of patient-oriented research in those countries.
United Kingdom
The National Institute for Health and Care Research (NIHR) is working on embedding research in clinical practice, with the patient perspective very much at the core.
“As part of the NIHR’s commitment to enhance the health and wealth of the nation through research, we work with health and care organisations and the NHS [National Health Service] to improve the environment for health and care research in England. This means funding and supporting the delivery of research that is practically and meaningfully embedded in the experience of patients and service users, regardless of where they live, as outlined in our strategy Best Research for Best Health.” – NIHR website
To support public engagement in research, the NIHR Coordinating Centre offers a range of initiatives, from a Research Champions program to involve patient partners in research, an interactive training program for public reviewers, public partnerships, resources for patients and students and more.
“Working with partners, NIHR needs to tackle the ingrained injustices that exist in the world of research in terms of who is involved, engaged or participating and also the inequities which exist in the professional research workforce.” – NIHR website
United States
In the US, the Patient-Centered Outcomes Research Institute (PCORI) is the major funder of patient-oriented research, with a focus on comparative clinical effectiveness research to help patients understand which medical services, treatments and health practices are the most effective. It has awarded more than $3 billion in funding for 2000 projects since 2010.
All funding applicants must include a description of how patients will be engaged from start to finish, from study design through to dissemination of findings.
“In PCORI-funded research, patients and other healthcare stakeholders are equitable partners—as opposed to research subjects—who leverage their lived experience and expertise to influence research to be more patient centered, relevant, and useful. Their early and continued involvement throughout a study can lead to greater use and uptake of research results by patients and stakeholders within the healthcare community.” – PCORI website
Ensuring diversity, equity and inclusion in its work is important, and PCORI offers engagement awards to reach diverse populations. Examples include capacity building among Chinese speaking patients with vascular issues, advancing equity in caring for Black women with endometriosis, virtual patient-centred care, a veteran-led awareness campaign on PTSD treatment, and hospital to home care coordination for children and youth with special health care needs.
Helping address health care issues that affect families is a priority, and many of these mirror urgent issues challenging our own health systems in Canada, such as cancer, diabetes, mental health, access to care and more. Engagement of patient partners, whether in Ontario, the US, UK or in other Canadian provinces, will help ensure research is relevant, inclusive and centred on patients.