The Power of the Patient Voice: A catalyst to promote change
When we look at data, it’s sometimes easy to forget the human side of the story. To improve patient health, it’s important to understand the patient voice. At the Canadian Institute for Health Information (CIHI), we want to bring the patient perspective to more of our work.
Understanding the patient voice
Patients offer a unique perspective that can’t be captured through data alone. Their perspective of care viewed from their lived experience helps us better understand how information is used to manage their health and allows for a more person-centric approach to the delivery of care. To achieve better health outcomes and improve the experience of care providers and patients, we need to understand the patient’s perspective.
Importance of patient perspectives
Understanding a patient’s experience when they received health care is integral to improving patient-centred care and assessing the performance of our health systems. Patients’ experiences can highlight gaps in care, help identify priorities, and guide research questions. They can provide important contextual information about findings and help research teams communicate their results to the public in a meaningful way.
How patient voices drive progress
Our patient engagement aims to integrate the patient voice into projects across the organization and humanize the data with lived experiences of all Canadians. This important work includes the development of engagement tools, best practice resources, and communities of practice through which the patients themselves lead discussions, share their personal stories, provide advice and guidance on how to include more diversity, and foster trust-based relationships.
By considering and integrating the patient voice in how we word and visually display our performance indicators, we’re ensuring that this data is not only accessible by those in the health care system, but to the public as well.
CIHI’s commitment to patient-centred care
At CIHI we believe that the patient’s voice is a catalyst to promote change. We have a great appreciation for authentic and meaningful patient engagement when it is done early in the process and throughout a project’s lifecycle. When patients share their expertise, their advice, and their journey with us, they give us unique insights that help us understand our data. Patient experiences help to explain our findings and ensure our work is relevant to decision-makers throughout the healthcare system.
As CIHI works to expand outreach to communities whose voices have been typically left out of the decision-making process, we are exploring opportunities to build new outreach strategies with diverse groups of patient partners and organizations. This includes reviewing CIHI policies with an EDI (equity, diversity and inclusion) lens, benchmarking CIHI against leading practice and creating a culture of learning that celebrates, recognizes diversity, and respects the values, beliefs, and attitudes of all — the patient perspective is an important part of that work.
Throughout our work, CIHI uses various methods of engagement to reach those with lived experiences depending on the need of each project. These roles range from: patients as representatives, patients as advisors, and patients as partners. As part of these roles, opportunities of engagement include:
- Expert advisory/ working groups
- Focus groups
- 1-on-1 interviews
- Surveys
- User experience testing
- Meetings with patient organizations
- Storytelling/ journey sharing/ quotes
- Panel participation
- Community of practice
- Public consultations
- Abstract reviews
Our goal is to support better and more equitable health outcomes for all Canadians. If you’d like to help shape the future of healthcare, reach out to our team at Patient Experience | CIHI.
