What does it mean and why might you want to be involved?
“Nothing About Us Without Us!”
The importance of involving patients (defined as patients, their informal caregivers, family/friends and the community at large) in all levels of our research enterprise is well recognized. We engage our community and patients in our research activities in several ways: patient forums, focus group discussions, surveys or polls and formalized partnerships.
Engaging patients is critical to our understanding of the issues that are most important for those living day-to-day with a specific condition. Only patients have the personal experience to understand the true effects of the diagnosis. This unique expertise must be shared with researchers.
- Help shape the future of cardiovascular research
- Meet other patients with similar conditions
- Share valuable information about living with your heart condition
- Work collaboratively with researchers and patients towards positive change
- Learn about study participation opportunities
- Contribute meaningfully to humankind
We need to know your views on how the condition affects you personally, for example, what you consider to be the worst symptom(s) to deal with, what frightens you most, the challenges to coping with the condition, how we could do things differently, what has been improved that made a positive difference for you, etc. From there a collaborative team of clinicians, scientists and patients may transform the focus of the research or the outcomes to target.
We also need input on more general questions, such as priorities for research, best methods to communicate research participation opportunities, educational gaps that need addressing, etc. and perhaps ideas that we have not even considered!
What can you do to help?
We are seeking appropriate volunteers to serve as Patient Partners in Research, to work alongside our Scientists, Clinician Researchers and staff. You may be an ideal Patient Partner candidate and we encourage you to apply if you have experience living with a cardiac condition and have the following characteristics:
- An interest in positive change
- Time to contribute
- Good listening skills
- Respect for others’ views, even when they don’t match your own beliefs
- Able to provide feedback in a constructive manner
- Work well with others
What might you be asked to do?
Your interests and expertise will be a priority when considering task assignments. You will not be expected to participate in any activities that make you feel uncomfortable.
Examples of potential activities or tasks:
- Answer questions or complete surveys about your condition or experiences as a patient
- Review research related documentation
- Contribute to the determination of health related outcomes that are important to patients
- Serve as a committee member
- Participate or lead a focus group or education session
- Assist with study participant recruitment
- Mentor for patients new to research
- Share results of research studies
- Administrative tasks
Patient Partner Questionnaire and Selection
Patient Partners are selected through a four-stage process:
- Completion of this initial questionnaire to help us understand a little bit about who you are, what you would most like to be involved with, and to assess where your precious time and skills may be best utilized.
- You may update this questionnaire at any time
- You will be contacted annually, reminding you to update your information if anything has changed
- Once a need for a Patient Partner is identified, a simple interview process to ensure a good fit for everyone.
- Depending on the assigned tasks or role, and the level of patient contact (if any), additional steps may be added before you begin. Examples of possible requirements are: providing reference letters and/or a recent police check, completion of on-line Heart Institute training, or research specific training such as the TCPS2 Tutorial in Research Ethics (also completed on-line). Details will be provided to you if needed.
- Once selected as a Patient Partner, Research Services staff will provide you with all necessary training for you to be successful with your new task(s)/role!
Please complete the following questionnaire to the best of your ability; you do not need to answer any questions you are not comfortable with. Your responses are used only for selection of patient partners and will otherwise remain confidential. If you require assistance completing the questionnaire please contact email@example.com.
The Ottawa Region for Advanced Cardiovascular Research (ORACLE) Patient Engagement in Research Strategy was approved by the Heart Institute in 2015.
The Patient Engagement in Research Advisory Council (PERAC) membership consists of representatives from the Ottawa Heart Institute Research Corporation (OHIRC) Board of Directors, researchers, study participants, heart patients and community members including the Patient Alumni and Heart Support Group.
Operational support is provided by the Heart Institute’s Office of Research Services.