Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.
Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.
Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team
The BC Health Research Connection Project invites you to a community dialogue on health research. Registration is free.
You’re invited to a community dialogue on health research to discuss the development of a new provincial program that will help connect people like you to research opportunities. Below are the details for the event:
Date: Tuesday, June 27, 2017 Time: 5:45pm-8:00pm Location:
Marpole-Oakridge Community Centre (Auditorium)
990 West 59th Avenue,
Vancouver Registration: Free, click here. Please register by June 23.
*Refreshments will be served.
Whether you are healthy, sick, young or old, you can help by volunteering to participate in research in a variety of ways.
Come and share your ideas and tell us:
Why is health research important to you?
How can we keep you informed of research opportunities?
For additional information, contact:
Stefanie Cheah, Project Manager at Stefanie.email@example.com or 604-875-4111 (Ext. 22781)
The event is hosted by the BC Health Research Connection Project, which is led by Vancouver Coastal Health Research Institute in collaboration with health authorities, research institutes and universities across BC. Cheryl Koehn, Founder and President of Arthritis Consumer Experts, is a member of the research team.
Health Canada has issued a warning about ingredients in PureCare Herbal Cream
PureCare Herbal Cream, advertised as a natural treatment for eczema and psoriasis in children and babies, may pose serious health risks.
Health Canada testing confirmed the presence of a prescription steroid (clobetasol propionate) and another ingredient (phenoxylethanol) not declared on the product label. These ingredients may cause health effects ranging from skin irritation and dehydration to increased blood pressure. Continue reading →
The Aboriginal Children’s Hurt and Healing Initiative wanted to answer one simple question: What does pain look like? Not what it feels like, but what pain would look it if you had to express it on paper, or in this case, canvas.
In an interview with CBC News, John Sylliboy, community research co-ordinator with the Aboriginal Children’s Hurt and Healing Initiative, said: “Aboriginal children feel and experience pain just like anyone else. It’s just that they express their pain very differently. They don’t necessarily verbalize their pain, or they don’t express it outwardly through crying or through pain grimaces. A lot of kids, they just suck it up. That’s what they say all the time. ‘We just suck it up.'”
The research study spawned in 2008 when Margot Latimer, a clinical scientist at the Centre for Pediatric Pain Research at the IWK Health Centre in Halifax, observed there was no First Nations youth being referred to their pain clinic at the IWK hospital.
“My painting is about pain and the black represents how she feels inside. But she has like this white kind of atmosphere and it separates it from her pain.” – Artist, 16-year-old Source: http://www.cbc.ca/news/health/aboriginal-youth-art-pain-hurt-healing-1.3852646?cmp=rss
SPINACH-project: SupPortIng seNiors And Caregivers to stay mobile at Home
Participants sought for short evaluation of online module with options how to stay independent at home when aging
Decisions about how to stay independent at home are difficult ones for seniors, and we often hear that they do not know what their options are to do so.
We have created an online module (webpage) for seniors and caregivers who are facing decisions (with their health professionals) about how to stay independent at home. We are currently looking for seniors and caregivers that are willing to have a look at our module (as long as you like), and fill out a one-time questionnaire with your evaluation of it (10-15 minutes). With your help we can improve the module to meet your needs. Continue reading →
North America’s first on-line classroom designed to educate, empower and graduate today’s modern arthritis patient
Arthritis Consumer Experts (ACE) today announced the launch of its newest on-line patient education program: JointHealth™ Education. Designed to enable arthritis patients to progress from being a “student” of arthritis to full-fledged “graduate,” JointHealth™ Education empowers and equips them to be equal partners on their health care team. As part of the launch, ACE is introducing the first course in the program – JointHealth™ Education: Rheumatoid Arthritis (RA) – to help patients and their healthcare providers better understand each other’s motivations and goals for the patient’s overall treatment and care plan.
“JointHealth™ Education was inspired by many of ACE’s members living with an inflammatory arthritis who have told us they lack the communications expertise to have full, satisfying conversations with their rheumatologists on topics such as treatment options during their clinical visits. The program is informed by our organization’s participation on a global advisory panel that conducted a survey in 16 countries of rheumatoid arthritis patients and their health care providers. The results illuminate the discord between the needs, concerns and fears of patients compared to the views of their health care providers,” said Cheryl Koehn, Founder and President of Arthritis Consumer Experts and a member of the RA Narrative Global Advisory Panel.
ACE is searching for Canada’s Best Workplaces for Employees Living with Arthritis
To help kick off Arthritis Awareness Month in Canada, Arthritis Consumer Experts ACE) today announced the launch of the third annual Canada’s Best Workplaces for Employees Living with Arthritis. The judging criteria this year will particularly value those organizations providing an environment that meets the needs of employees living with arthritis to manage their disease and work with symptoms such as pain, fatigue, joint dysfunction or immobility.
“Smart employers know committed, productive teams require an environment where employees know they can balance work, family and personal responsibilities. In this third year of our award, we are looking closely at the availability of flexible work benefits and policies, as well as employees’ comments on their effectiveness,” said Cheryl Koehn, President and Founder, Arthritis Consumer Experts. “We want to recognize companies providing innovative flexible work arrangements to help employees with arthritis, and other chronic diseases, take better care of themselves, and in turn report less pain, fatigue, and disruption at work, allowing them to remain employed for longer.” Continue reading →
WHO: Research Ambassadors are members of the public who live with, or advocate for others living with a condition that falls under CIHR – IMHA’s research mandate (conditions related to bones, joints, muscles, connective tissue, skin and teeth). Research Ambassadors bridge the gap between researchers and patients, addressing the different stages of the research process known as: Basic Biomedical Science, Clinical Science and Knowledge, and Clinical Practice and Health Decision Making.
Researchers, patients and government come together
The conversation on new reform from the Canadian Institutes of Health Research that impacts federal research funding continues.
We commend Minister Philpott for her request for the Canadian Institutes of Health Research (CIHR) to convene a working meeting with key representatives of the research community to find common ground and move forward with solutions that address the issues around the quality and integrity of CIHR’s peer review system.
Minister Philpott’s actions are in response to views expressed within the health research community, and from patient organizations like Arthritis Consumer Experts (ACE).
All stakeholders in healthcare – governments, researchers, clinicians and patients – have an obligation to consider the impact of changes to the CIHR and Canada’s world-class standing in the scientific community and the benefits of health research for all Canadians.
Below is the message from Minister Philpott to Canada’s health research community: Continue reading →
A free workshop by Aging, Mobility, and Cognitive Neuroscience Lab
Explore the role of exercise on physical and brain health with professional experts Drs. Steven Blair, Kirk Erickson, and Brian Saelens. The doctors will be sharing their research on the physical and cognitive health benefits of physical activity in today’s society.
Space is limited so please register by April 29, 2016!
Date: Friday, May 6, 2016 Time:3pm-5pm Location: University Centre (UBC), 6331 Crescent Road, Sage East (Main Level)
*Registration opens at 2:30pm. Light refreshments will be provided.