Research takes many forms: in a laboratory searching for genes or proteins that cause heart disease, developing or testing a new drug or treatment, or in a clinic or hospital reimagining how health care can be delivered for someone who has had a stroke. These are just a few examples – methods and approaches are always emerging.
Get involved by:
- helping set research priorities
- shaping a study’s approach or design
- being part of a clinical trial
- participating in a survey or focus group
- reviewing or overseeing how information is shared with participants
- evaluating your experience as a participant in a study
- reviewing applications as a lay reviewer in a peer-reviewed competition.
You are an integral part of creating new knowledge, improving our understanding of risks and disease, or advancing treatments and recovery.
One of the main ways that patients contribute to research is by participating in clinical trials. The Canadian Institutes of Health Research define clinical research as research on or for patients that seeks to improve diagnosis, treatment and quality of life.
Clinical trials involve volunteers who agree to a type of intervention such as a drug, procedure, device or lifestyle change (like stopping smoking). In clinical trials, researchers can be looking for new ways to prevent disease, to screen or detect diseases or to treat those living with diseases.
For testing of new drugs, clinical trials must go through four phases and only move forward if the previous phase was successful. The initial phase tests for the safety of the medication and whether it does what it is intended to do. Over later phases, it is tested on more people to ensure a consistent, positive effect and compared to other medications or treatments.
Talk to your healthcare provider about opportunities at your local hospital and view the opportunities below, which have been reviewed by Heart & Stroke.
Heart & Stroke reviews and shares information on research studies and clinical trials in Canada that are actively seeking participants or public/patient involvement.
- Operation COVID - Canadians’ Occupations during Viral Infection Days: A New Normal?
- COVID Brain Study: Cognitive Outcomes after COVID-19 Infection
- An Investigation of Musculoskeletal Problems after Stroke
- Heart Patient and Caregiver Engagement for Health System Improvement Study
- The Patient Reported Inventory of Self-management of Chronic Conditions (PRISM-CC) Study
- Improving balance and walking through dance for people with ongoing stroke symptoms
- Hero Glove Project, stroke rehabilitation University of Toronto/Toronto Rehab Institute
- Using technology to improve arm movement after a stroke
- New WebApp to support women in recognizing and self-managing cardiac pain and symptoms
- Her Heart Matters
- Exploring the experiences and challenges of people who use home tube feeding (HTF)
Find more clinical trials:
Health Canada Clinical Trials Database provides information about Canadian clinical trials involving human pharmaceutical and biological drugs.
ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world.
World Health Organization’s International Clinical Trials Registry Platform compiles information about clinical trials taking place internationally.
ItStartsWithMe by the Network of Networks, a not-for-profit association of 87 member organizations, representing over 3,000 clinical research professionals, has patient and public information on participating in clinical trials.
Know your rights as a participant:
Researchers and their teams work hard to explain the risks and benefits of a research study. Many institutions have a “bill of rights of research participants” – ask to see it and exercise your rights. Ask questions. Talk your healthcare provider, your friends and family.
Here is an example of a research participant bill of rights, which was jointly developed by N2 and the Harvard Catalyst group.
Additional sources for clinical trials:
Canadian Cardiovascular Society
Canadian Heart Failure Society
Centre of Excellence on Partnership with Patients and Public
CenterWatch database (search “Canada”)
Canadian Partnership for Stroke Recovery
Honeybee Research Hub
Alberta PaCER (Patient and Community Engagement Research) Patient Internship Program
University of Calgary Clinical Trial Participation
Alberta O’Brien Institute for Public Health
Newfoundland and Labrador
North West Territories
Prince Edward Island
It’s important that Heart & Stroke research is easily communicated to the public and relevant to those at risk from or living with heart disease, stroke or related conditions. That’s why each research application requires a lay summary and members of the public participate in our peer review panels.
Role of a lay reviewer: Lay reviewers are volunteers who play a key part in the review process for our research programs. These volunteers are patients or people with lived experience who join the scientists and researchers on our peer review panels and look at the research applications. Lay reviewers help ensure that research is communicated clearly and aligned with Heart & Stroke’s mission.
Apply to be a lay reviewer: If you are interested in contributing to our research excellence as a lay reviewer, please contact email@example.com.
Heart & Stroke is committed to ensuring that our research results are accessible to all.
Most researchers publish their work in peer-reviewed journals such as the Lancet, Cell or the New England Journal of Medicine, where it is assessed by other top researchers before being published. We expect all researchers who receive our funding to follow Open Access so that their publications are available without cost. We also work with them to promote and share their results.
Heart & Stroke is committed to supporting people living with heart conditions, stroke or related dementia as well as their caregivers. We have resources to connect you with an online community of people offering peer support and help with the recovery journey.
Since 2016, Heart & Stroke has sought to stimulate dialogue about heart disease and stroke in women, address sex and gender disparities in prevention and management, and ultimately transform and save women’s lives through strategic capacity building, research, and knowledge exchange.
With the support of a $5 million grant from the federal government, Heart & Stroke supports early and mid-career researchers, funds research on women’s heart and brain health, and coordinates a community of interest to facilitate knowledge sharing and capacity building. The Women’s Heart & Brain Health Research Network aims to improve knowledge sharing and collaboration and to enable capacity building for the next generation of researchers.
The network facilitates learning and sharing of opportunities and resources. Advancing knowledge and skills related to using Sex- and Gender-Based Analysis and Research (SGBAR) for researchers working on women’s heart and brain health is a priority.
Knowledge sharing activities facilitate learning from researchers funded through our Women’s initiative as well as experts within the Women’s Heart & Brain Health Research Network. Learning opportunities are convened online and in person.
In this March 2019 webinar, Dr. Bernice Downey describes her effort to understand how Indigenous women’s heart health has been negatively impacted by various cultural and social factors, and how to remedy this problem.
Membership is open and diverse. The network includes Indigenous organizations and communities, individuals with lived experiences including survivors and caregivers for women, professionals such as researchers, clinicians, and knowledge users like government bureaucrats and policy makers. We solicit the engagement of trainees and early career investigators.
If you are interested in joining, please contact us for more information.
Next research network meeting: Oct. 23, 2019 in Montreal.
To sign up for the Women’s Heart & Brain Health Research Network eNewsletter, please contact us.
View recent editions:
Opportunities for trainees and early career investigators
The Women's Heart & Brain Health Research Network is working hard to enhance the capacity of junior and early career investigators and trainees working on women’s heart and brain health, to better prepare the next generation of researchers.
Trainees can showcase their work and enhance their presentation skills through mini research rounds. These mini-rounds are one-hour webinars open to members of the network and the public to raise the profile of early career investigators, exposing their work to feedback and potential collaboration and career advancement.
If you’d like to showcase your work, please submit an expression of interest.