What is Patient Engagement in Research (PER)?

Patient engagement in research is meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Other terms for patient engagement in research might include: involvement in research, participation in research, collaboration in research, patient-centred research, patient partnered research, patient-oriented.

Guiding Principles

Sunnybrook research teams, including patient partners, strive to maintain and integrate the following principles at every step of the research process.

Accessible and Appropriate: Sunnybrook will embrace diversity of patients, families and communities and strive to use engagement methods that are sensitive to their needs. We will provide clear, accessible, and all-inclusive information to allow for participation in all aspects of the project and in decision-making processes.

Inclusive: We will balance the participation and influence of various groups and individuals, taking care to develop connections with those who are harder to reach and traditionally underserved (e.g., young people, seniors, people with disabilities etc.)

Timely: We will communicate early and often in order to allow sufficient time for meaningful conversation, consultations, and modifications to plans.

Transparent: We will be committed to open communication about the engagement process, our purpose, goals, accountabilities, expectations, and constraints. When research is related to administrative, education and research decisions, the results of consultation and any changes that have been made because of the engagement process will be made public.

Accountable: We will monitor the effectiveness of our engagement strategies along with maintaining and upholding our process and principles.

Responsive: We will be respectful of and take into consideration input from patients, families, and communities. We will modify or improve plans and actions to reflect advice, where possible.

Compassionate: We will involve our patients, families and community using communication that is compassionate and inclusive.

Why is patient engagement in research important?

The goal of conducting this style of research is to achieve benefits that matter to patients by incorporating and building upon their lived experience and expertise which leads to¹:

• Improved health and improved access to the health-care system by taking action and modifying existing processes so that they specifically reflect the lived experience of patients.
• Developing new educational materials, tools, and planning documents such as electronic personal health records for mental health users.⁴
• Creation of new programs such as a family programs in intensive care units.⁴
• Gaining a better understanding of the research process and health-care system which allows one to be a more informed patient partner.
  • Patients are better able to advocate for themselves and others along with improving their own self-care.⁵
• Improved quality of life that is connected to patient-centered outcomes by giving patients a bigger voice and better representation in research.
  • Representing underserviced groups such as young people, seniors, people with disabilities.⁵
  • Representing underserved communities such as seniors, ethnic minorities, and rural populations.⁵

How can Patient Partners be engaged in the research process?

Patient Partners are team members who contribute to the research process and activities during various stages of a study which are the initial planning, conducting the experiment and presentation of the results. Taking part in research as a patient partner is different from being a research participant, or ‘subject’ in a research study because the involvement is extended beyond contributing to data collection. Patient partners can be engaged in some of the following ways throughout the research process²:

• As part of setting research goals by assisting the study team in deciding where research should be focused:
  • Helping decide what specific research questions should be asked.
  • Helping set research priorities based on what is important to patients and families.

• As part of creating the design of the research study:
  • Discussing the best way to approach participants and provide advice on recruitment strategies.
  • Providing feedback to make the study design easier to understand.
  • Reviewing interview questions or questionnaires that will be used in a study.

• As part of gathering and looking over (interpreting or analyzing) the data:
  • Reviewing the data.
  • Giving thoughts on what the results could mean.
  • Giving feedback on gaps in the data that need to be addressed.

• By helping share the results of the research to a wider audience:
  • Helping design material such a pamphlet or video to share the results.
  • Discussing which groups of people need to know about the study results.
  • Being part of the writing team for the final report or article for the study.

• By helping implement the results into health-care practice:
  • Working with the hospital team to find the best way to change current care based on the research study results.
  • Contributing to knowledge translation which is a process that involves the combination, distribution, exchange and application of knowledge.¹