Dr. Cathy Craven
May 4, 2022
Health Care Activist
Keynote Speech: “Patient Engagement for The Win!”
Sue Robins is a health care activist, speaker and author. Her latest book “Ducks in a Row: Health Care Reimagined” is a scrappy challenge to the established health care world. It shares wisdom from her work in patient and family engagement. Her first book, Bird’s Eye View: Stories of a life lived in health care is a poignant memoir of her experience as a caregiver and cancer patient.
Sue has also written for The New York Times, Canadian Medical Association Journal and The Globe and Mail. She is a Fellow with Dr. Victor Montori’s Patient Revolution. She co-owns Bird Communications, a health communications company.
She lives with her husband and son on the west coast of Canada. She can be found at www.suerobins.com and on Twitter at @suerobinsyvr.
UHN is an international exemplar for involvement, information exchange, and participation of patient, families, and partner organizations in research.
This engagement is authentic, transparent, responsive, accountable and predicated upon our mission
Common Terminology when talking about
Patient Engagement in Research
While some of these terms may have different meanings to different people, we are providing you with definitions to use in your work on PER at or with UHN. This will help to ensure that everyone is on the same page and understands the words that are being used.
- A patient partner is a person with a personal experience of a health issue or a family or friend caregiver. For example, a patient partner may live with a condition or have had experiences interacting in the health system
- Provides perspectives and insights based on their ‘lived experiences’
- Patient partners help plan, do or share the research rather than participate in the research
- Other terms you may also hear to describe a patient partner include person with lived experience (sometimes shortened to “PWLE” or “PLEX”) and patient research partner
(also abbreviated as “PE”)
- Patient engagement is meaningful and active collaboration with patients as partners in research
- Includes engaging patient partners in different ways throughout the research process so they can provide their own lived experiences, insights, and perspectives to research with the intent to improve the research and the relevance of the research results
- PE in research does not mean that the overall approach to research needs to change, instead it means bringing patient partners to the team so they can contribute in ways that complement the expertise and knowledge of the other research team members
- Sometimes you may hear the term patient and public involvement (shortened as “PPI”) used instead of patient engagement
- Canadian Institutes of Health Research
- Harrington RL, Hanna ML, Oehrlein EM, Camp R, Wheeler R, Cooblall C, Tesoro T, Scott AM, von Gizycki R, Nguyen F, Hareendran A, Patrick DL, Perfetto EM. Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group, Value in Health, Volume 23, Issue 6, 2020, Pages 677-688
A system in which motivation, and culture are aligned and knowledge generation, dissemination processes, and technology are embedded into daily practice to produce novel and sustained improvements in research, care and communication.
Education of Scientists, Staff and Partners
Evaluation framework, transparent outcomes
New Culture & meaningful engagement
Potential Roles -
Patient Partner in Research
Patient partners bring their lived experiences and expertise to these roles and complement other expertise in these activities. The enclosed patient partner roles, their descriptions, and examples of activities that are part of these roles were created to help to work towards clarity around these roles at UHN. You will notice that there is some overlap between roles. Patient partners may carry out these roles in whole or in part, over the course of a short or long-term project. The types of projects will vary in terms of time, depth, and commitment.
The examples for each role are not inclusive, rather they are meant to give you an idea of what patient partners in these roles might do. Input at the May 4th, 2022 Strategic Planning Meeting will help us to continue to add to and revise these roles, their descriptions and examples of activities.
A patient partner in this role is a member of the research team just like any of the others on the team, such as the researchers, clinicians, students, and others who are part of a ‘traditional’ research team. In this role, a patient partner may:
- Identify research priorities
- Co-create research questions
- Help generate or contribute to a research plan
- Participate in and contribute at team meetings
- Do the research (for example, helping develop and reviewing including participant-facing materials)
- Analyze results
- Participate in or contribute to knowledge translation activities.
or Process Governor
A patient partner in this role is involved in making decisions or in governing- that is, overseeing the operations of a project, an initiative or an organization. This role may be at a more strategic level than some of the other roles that patient partners undertake (for example, being a member of a board). In this role, a patient partner may:
- Participate as a member of an oversight or steering committee, or as a member of a Board
- Review submissions to the Research Ethics Board (for example, provide feedback on methods and on participant remuneration) and participate in meetings as a member of a Research Ethics Board
- Participate on search or interview committees for new staff members
- Participate in staff onboarding.
A patient partner in this role reviews various types of research materials and provides their opinion and feedback on the materials based on their lived experiences and insights. These research materials might be a grant application, a manuscript submitted for publication, a poster submitted to a conference or meeting, and other types of materials. A patient partner’s input is combined with that of scientific and medical experts to make decisions about and provide feedback to the creators of these materials in hopes to improve the materials. In this role, a patient partner may:
- Review submitted materials and contribute to decisions made by review panels
- Review and vet scientific posters
- Review lay and scientific abstracts or articles for publication
- Review lay summaries of research implications
- Review and provide input on the content of research education materials and consent forms
- Review or judge different types of applications (for example, employment, grants or other awards, etc.).
A patient partner in this role is involved in contributing to fundraising efforts rather than carrying out their own individual fundraising activities. Here they are likely to work with someone from a Foundation, or fundraising team, who will arrange for their involvement in specific activities that may include videos, in-person and virtual presentations, and more. In this role, a patient partner may:
- Share their health or healthcare story or experiences
- Leverage and invite their own social network(s) into a fundraising event or campaign
- Contribute to developing impactful stories about research to be used in fundraising materials and at fundraising events.
A patient partner in this role is focused on sharing or disseminating the knowledge from research with the audience for whom this research is intended. In this role, a patient partner may:
- Help put or put the research findings in to context in the area of study
- Provide input and insights to products that share research results such as infographics, videos, information sheets, pamphlets, policy briefs, scientific publications, etc.
- Share these products with different audiences (for example, this might be policymakers, patients, or others).
A patient partner in this role may do a lot of the same activities as a patient partner who is a knowledge translator/disseminator, however they also actively share the research results with specific audiences and have discussions with them about the research results. In this role, a patient partner may:
- Help put or put the research findings in to context in the area of study
- Provide input and insights to products that share research results such as infographics, videos, information sheets, pamphlets, policy briefs, scientific publications, etc. Different products may be created for different audiences.
- Build relationships with or take advantage of their own relationships with organizations or individuals who might benefit from specific research results
- Share these products with different audiences and have discussions with them about how the research results affect or impact them. For example, if the audience is policymakers, it might be about how the research results will change policy; if the audience is healthcare providers, it might be about how the research results will change their practice, etc.
A patient partner in this role has a paid employee position in research. Like any other employee position, they have specific responsibilities for their role, including deliverables and timelines to be met. In this role, a patient partner may:
- Submit materials to the Research Ethics Board
- Assist with recruitment of research participants
- Collect and analyze data
- Disseminate research results.