Patient Engagement.
“Engaging patients in health care research makes (investments in) research more accountable and transparent, provides new insights that could lead to innovative discoveries, and ensures that research is relevant to patients concerns. The international experience with engaging citizens and patients in research has shown that involving them early in the design of studies, ideally as early as at the planning stage, leads to better results”
Resources for Patients
What is Patient-Oriented Research?
Patient-oriented research, also called patient engagement, takes seriously the idea that patients, caregivers, and families are at the heart of health research. This means that rather than simply being research participants, patients are engaged as collaborators in the research process. By engaging patients early and often, research teams can produce findings that are more meaningful to the lived experiences of their patients. Patient partners bring expertise to the table that no one else can through the knowledge they have gained from living with a mental illness as well as their experience with mental health care and treatment.
What Would I Do as a Patient Partner?
There are many ways to get involved in health research, depending on your level of comfort and the extent to which you’d like to get involved in research.
Where Can I Learn More About Patient Engagement?
Clinical Trial’s Ontario Patient Decision Aid
This decision aid is meant to help you decide if you are ready to be part of a patient-oriented research team. Reading and working through each section is meant to help you consider a number of factors related to patient-oriented research in clinical trials, as well as provide you with links to other reliable resources and information.
Institute for Patient and Family Centered Care’s Tips on Sharing Your Story
Patient engagement projects often involve requests for patients, families, and caregivers to share their stories as a way of explaining why they want to be involved in research. This can be especially hard when talking about issues like mental health, where experiences can often be negative. The Institute for Patient and Family Centered Care developed these are tips for patients and families who are asked to share their story or experiences in either an informal group setting or a formal speaking environment.
CIHR’s Research Jargon Buster
Sometimes, researchers forget that not everyone speaks their language. This glossary provides lay language definitions for frequently used health research terms.
Patient Voices Network’s Tips for Successful Virtual Meetings
When we aren’t used to virtual meetings, the idea of participating in one for the first time may be a little overwhelming. That’s why the Patient Voices Network created this brief guideline with a few tips that you can review before a virtual meeting to make sure that it will run smoothly.
Do you have Patient Engagement resources you’d like us to share? Please do not hesitate to reach out to us via our Contact Us page!
Resources for Investigators
How Do I Engage Patient Partners?
In 2017, our team held a research forum that brought together people with lived experience of suicide and suicide prevention researchers, trainees, and policy makers with the goal of improving the skills of all participants to help them partner meaningfully on suicide prevention research projects.
Through sharing experiences, good and bad, our partners with lived experience crafted a set of recommendations for researchers. These recommendations are by no means exhausted but give researchers a starting point in terms of thinking about how to partner with patients in a meaningful and effective way.
Where Can I Learn More About Patient Engagement?
Health Quality Ontario’s Companion Document to Ontario’s Patient Engagement Framework
Ontario’s Patient Engagement Framework is a guide for planning, implementing and evaluating patient engagement activities. Health Quality Ontario has developed this helpful companion document that provides an introduction to each part of the Framework to help patients, caregivers and health professionals effectively engage with each other.
Clinical Trials Ontario Investigator Decision Aid
This decision tool will provide you with enough information to decide whether you are ready to engage a patient as a partner on your clinical trial team. It will take approximately 20 to 30 minutes to review the information in this decision tool and make a decision about whether you are ready to engage a patient as a partner on your clinical trial research team.
Patient Engagement: You’re Doing It Wrong
The blog post that launched the influential #HowNotToDoPtEngagement hashtag on Twitter, this piece describes an especially negative experience that one patient advocate had when collaborating with a health research team. A useful article for teams that want to avoid some of the more common mistakes made by researchers when attempting to include service-users in their studies.
Patient Engagement and Canada's SPOR Initiative: A Resource Guide for Research Teams and Networks
A resource guide prepared in 2015 on behalf of the Ontario SPOR Support Unit by Julia Abelson at McMaster University. As stated in the introduction, "this document seeks to clarify key concepts and terms relevant to involving patients in health research...describe, at a very high level, the current state of evidence about patient engagement...[and] assemble in one place a selection of resource documents collected from leading patient engagement organizations around the world...". Contains a wide array of useful web-links.
Patient Voices Network’s Guide to Patient Engagement
This guide is an important resource that provides information the founding principles of patient engagement as well as recommendations on how to best partner with patents on health research projects. While this guide was developed for healthcare providers from British Columbia in mind, its recommendations are application across Canada and internationally.
BC SUPPORT Unit’s Plain Language Guide
Everyone should ‘get’ your work! Especially in a patient-oriented research environment, promoting shared understanding in scientific and non-scientific audiences is part of working together successfully. To address this, the BC SUPPORT Unit has developed a plain language tool to assist in developing content for lay audiences through a focus on framing, structure, and the use of readability tools.
Do you have Patient Engagement resources you’d like us to share? Please do not hesitate to reach out to us via our Contact Us page!