What we heard report: Online consultation on future priorities in patient-oriented research

Introduction

In 2021, CIHR conducted a series of discussions with Canadians via an online platform called Bang the Table to learn their views on future priorities in patient-oriented research (POR) that will help in achieving the goals set out in the CIHR Strategic Plan 2021-2031. This was part of a broader engagement with Canadians to inform future funding and activities in patient-oriented research, led by Canada’s Strategy for Patient-Oriented Research (SPOR).

Respondents participated in a two-step consultation process that could be completed in English or French, online, by phone, or via email. The link to the online platform was shared by email, social media, and newsletters with people across Canada. It was also posted on the websites of CIHR’s partners across Canada. Respondents were encouraged to share this consultation broadly with their colleagues, collaborators, and networks.

We heard from people living in all provinces and territories across Canada. Three hundred and twenty respondents, including researchers, people working in health care, people working at non-profit organizations, provincial/territorial government employees, students, members of the general public, members of Indigenous (First Nations, Métis, or Inuit) organizations, decision-makers and knowledge users shared their feedback through a survey and online forums.

Some of the major themes that emerged in the consultations are summarized below.

Highlights

In the online discussions, respondents’ comments ranged from specific recommendations on how to improve primary care and care for Canada’s aging population to more cross-cutting areas such as focusing on equity and the health of Indigenous peoples. The summary below represents the most common themes raised by respondents.

• Equity

  Most respondents thought that future patient-oriented research needs to focus on making sure health inequities (related to race, ethnicity, religion, citizenship status, language, age, gender, sexual orientation, and location in remote/rural areas) are addressed and reduced.

  Examples of proposed research areas include:

  • Socio-culturally responsive models of care to address existing health disparities and health care inequities among underserved or marginalized communities, including Black, Indigenous, and other equity-seeking groups
  • Interconnecting health systems with that of housing, food, and safety to understand and meet essential needs of diverse populations
  • Equity in access to health care services
• Health of Indigenous Peoples

  People from across Canada spoke of the need for future patient-oriented research to center First Nations, Inuit, and Métis voices during all stages of SPOR program and research development to ensure Indigenous voices are appropriately and fully included. They recommended having diverse Indigenous voices identify priority areas and lead the discussions and providing more funding so that Indigenous community members can participate as partners in community-engaged research.

  Some examples of proposed research areas include:

  • Indigenous community engagement in health system planning
  • Indigenous healing and wellness, including studying the efficacy and effectiveness of land-based programming
  • Creating culturally safe and responsive health systems and focusing on building capacity within Indigenous communities.
• Mental health and addiction services

  Most respondents identified mental health and addiction services as being one the key areas for future research for patient-oriented research to meet the increased need across Canada.

  Some examples of proposed research include:

  • Mental health programs that help those experiencing mental health conditions and substance-use at the same time
  • How to better support equity-seeking populations in accessing digital and virtual mental health care and services
  • Child and youth trauma, including intergenerational trauma
• Improving primary care

  Many respondents noted that there needs to be more patient-oriented research in primary care since it has a central role in our health system to deliver patient-centered services. They indicated that research in primary care should focus on the needs of people in different life stages (i.e., children, youth, adolescents, older adults, etc.) They also noted that that there needs to be more patient-oriented research with people who have chronic diseases.

  Some examples of proposed research areas include:

  • Improving primary care and chronic disease management systems so that Canadians have access to health care without needing to visit emergency rooms
  • Rethinking primary care funding models to identify those that support patient-centred care
  • Best practices in integrated primary care service delivery
  • Strengthening early intervention and assessment of children and examining how the education and medical systems work together to support children
• Care for Canada’s aging population

  Many respondents thought that there needs to be more focused patient-oriented research on Canada’s aging population, since the COVID-19 pandemic has revealed serious gaps in how we care for older adults.

  Some examples of proposed research areas include:

  • Integrated health care services for older Canadians
  • Consumer education on the risks of prescription drugs, for example, older adults who take many medications
  • Home care for older adults in their own homes
  • Understanding the impact of social isolation on Canada’s aging population: technology barriers and enablers for maintaining social connections in the community
• Managing medications

  Respondents noted that a visit to a health care provider often ends with a prescription and limited advice from health care providers on how to manage medications, complications, etc. They suggested that future patient-oriented research should focus on reviewing best practices for patients and caregivers on how to manage medications and educate themselves about prescription medications in Canada along with improving access to treatment options that do not involve taking medication.

  Some examples of proposed research areas include:

  • The appropriate use of medications and non-drug therapies for all people in Canada to reduce health system costs and improve patient outcomes
  • How to improve access to general and detailed prescription drug information and online education through a comprehensive public program in Canada
  • Access to non-drug treatments (e.g., cognitive behavioural therapy for insomnia, mental health services, ), including identifying and overcoming patient barriers to access such as geographic, social, racial, and gender barriers
• Virtual care and digital health

  Respondents observed that several emerging technologies were used by health care professionals to deliver health services to people during the COVID-19 pandemic and that future patient-oriented research must focus on best practices for using emerging technologies to deliver health services.

  Some examples of proposed research areas include:

  • Technology platforms, particularly virtual care and digital health, keeping in mind population health and health equity
  • Best practices and outcomes connected to alternative modes of care (such as virtual care and home care - i.e., alternatives to patients travelling for care)
  • Virtual care such as eHealth, telehealth, eMental Health
  • Benefits and drawbacks of digital/virtual care
  • New roles for patients in digital health and the role of academic research in developing and evaluating new digital technologies
• Data access and use

  Respondents observed that the health care system needs to continuously learn from itself to provide better patient experiences and outcomes based on evidence. They suggested that future patient-oriented research should continue to focus on strengthening research in the different steps of this continuous learning cycle: to use data to identify areas for improvement, to increase knowledge in implementation science to make these improvements, and to help patients and researchers across Canada better understand how to work with, interpret, and use data produced in this learning health system.

  Some examples of recommended research areas include:

  • How to enhance data sharing/access across provincial/administrative borders while maintaining privacy and security
  • How to improve the quality of health data collected across Canada and improve researchers’ and the health systems’ ability to extract and use insights from data
  • How to get research findings to those who need to know the evidence and improve the likelihood that the findings will be used in decision-making
  • How to improve access to data to enable value-creating learning health systems

What's Next

This community input will be used by CIHR to inform our priority setting, and will also be shared by CIHR with partners as we work together to refresh Canada’s Strategy for Patient-Oriented Research. In the meantime, we are sharing this with the community as a source of patient and community input that can be considered in your research discussions.

If you have any questions about these results or patient-oriented research at CIHR, please write to us at SPOR-SRAP@cihr-irsc.gc.ca

Thank You

CIHR would like to thank the members of the community, including researchers, trainees, citizen advisory committee members, people with lived/living experience, and other members of the public, who dedicated time and effort to the online discussion. Thank you for joining the conversation!

Date modified:

2023-05-23