Breaking News
May 3, 2019 - Vaping and Smoking May Signal Greater Motivation to Quit
May 3, 2019 - Dementia looks different in brains of Hispanics
May 3, 2019 - Short-Staffed Nursing Homes See Drop In Medicare Ratings
May 3, 2019 - Study of teens with eating disorders explores how substance users differ from non-substance users
May 3, 2019 - Scientists develop new video game that may help in the study of Alzheimer’s
May 3, 2019 - Arc Bio introduces Galileo Pathogen Solution product line at ASM Clinical Virology Symposium
May 3, 2019 - Cornell University study uncovers relationship between starch digestion gene and gut bacteria
May 3, 2019 - How to Safely Use Glucose Meters and Test Strips for Diabetes
May 3, 2019 - Anti-inflammatory drugs ineffective for prevention of Alzheimer’s disease
May 3, 2019 - Study tracks Pennsylvania’s oil and gas waste-disposal practices
May 3, 2019 - Creating a better radiation diagnostic test for astronauts
May 3, 2019 - Vegans are often deficient in these four nutrients
May 3, 2019 - PPDC announces seed grants to develop medical devices for children
May 3, 2019 - Study maps out the frequency and impact of water polo head injuries
May 3, 2019 - Research on Reddit identifies risks associated with unproven treatments for opioid addiction
May 3, 2019 - Good smells may help ease tobacco cravings
May 3, 2019 - Medical financial hardship found to be very common among people in the United States
May 3, 2019 - Researchers develop multimodal system for personalized post-stroke rehabilitation
May 3, 2019 - Study shows significant mortality benefit with CABG over percutaneous coronary intervention
May 3, 2019 - Will gene-editing of human embryos ever be justifiable?
May 3, 2019 - FDA Approves Dengvaxia (dengue vaccine) for the Prevention of Dengue Disease in Endemic Regions
May 3, 2019 - Why Tonsillitis Keeps Coming Back
May 3, 2019 - Fighting the opioid epidemic with data
May 3, 2019 - Maggot sausages may soon be a reality
May 3, 2019 - Deletion of ATDC gene prevents development of pancreatic cancer in mice
May 2, 2019 - Targeted Therapy Promising for Rare Hematologic Cancer
May 2, 2019 - Alzheimer’s disease is a ‘double-prion disorder,’ study shows
May 2, 2019 - Reservoir bugs: How one bacterial menace makes its home in the human stomach
May 2, 2019 - Clinical, Admin Staff From Cardiology Get Sneak Peek at Epic
May 2, 2019 - Depression increases hospital use and mortality in children
May 2, 2019 - Vicon and NOC support CURE International to create first gait lab in Ethiopia
May 2, 2019 - Researchers use 3D printer to make paper organs
May 2, 2019 - Viral infection in utero associated with behavioral abnormalities in offspring
May 2, 2019 - U.S. Teen Opioid Deaths Soaring
May 2, 2019 - Opioid distribution data should be public
May 2, 2019 - In the Spotlight: “I’m learning every single day”
May 2, 2019 - 2019 Schaefer Scholars Announced
May 2, 2019 - Podcast: KHN’s ‘What The Health?’ Bye-Bye, ACA, And Hello ‘Medicare-For-All’?
May 2, 2019 - Study describes new viral molecular evasion mechanism used by cytomegalovirus
May 2, 2019 - SLU study suggests a more equitable way for Medicare reimbursement
May 2, 2019 - Scientists discover first gene involved in lower urinary tract obstruction
May 2, 2019 - Researchers identify 34 genes associated with increased risk of ovarian cancer
May 2, 2019 - Many low-income infants receive formula in the first few days of life, finds study
May 2, 2019 - Global study finds high success rate for hip and knee replacements
May 2, 2019 - Taking depression seriously: What is it?
May 2, 2019 - With Head Injuries Mounting, Will Cities Put Their Feet Down On E-Scooters?
May 2, 2019 - Scientists develop small fluorophores for tracking metabolites in living cells
May 2, 2019 - Study casts new light into how mothers’ and babies’ genes influence birth weight
May 2, 2019 - Researchers uncover new brain mechanisms regulating body weight
May 2, 2019 - Organ-on-chip systems offered to Asia-Pacific regions by Sydney’s AXT
May 2, 2019 - Adoption of new rules drops readmission penalties against safety net hospitals
May 2, 2019 - Kids and teens who consume zero-calorie sweetened beverages do not save calories
May 2, 2019 - Improved procedure for cancer-related erectile dysfunction
May 2, 2019 - Hormone may improve social behavior in autism
May 2, 2019 - Alzheimer’s disease may be caused by infectious proteins called prions
May 2, 2019 - Even Doctors Can’t Navigate Our ‘Broken Health Care System’
May 2, 2019 - Study looks at the impact on criminal persistence of head injuries
May 2, 2019 - Honey ‘as high in sugars as table sugar’
May 2, 2019 - Innovations to U.S. food system could help consumers in choosing healthy foods
May 2, 2019 - FDA Approves Mavyret (glecaprevir and pibrentasvir) as First Treatment for All Genotypes of Hepatitis C in Pediatric Patients
May 2, 2019 - Women underreport prevalence and intensity of their own snoring
May 2, 2019 - Concussion summit focuses on science behind brain injury
May 2, 2019 - Booker’s Argument For Environmental Justice Stays Within The Lines
May 2, 2019 - Cornell research explains increased metastatic cancer risk in diabetics
May 2, 2019 - Mount Sinai study provides fresh insights into cellular pathways that cause cancer
May 2, 2019 - Researchers to study link between prenatal pesticide exposures and childhood ADHD
May 2, 2019 - CoGEN Congress 2019: Speakers’ overviews
May 2, 2019 - A new strategy for managing diabetic macular edema in people with good vision
May 2, 2019 - Sagent Pharmaceuticals Issues Voluntary Nationwide Recall of Ketorolac Tromethamine Injection, USP, 60mg/2mL (30mg per mL) Due to Lack of Sterility Assurance
May 2, 2019 - Screen time associated with behavioral problems in preschoolers
May 2, 2019 - Hormone reduces social impairment in kids with autism | News Center
May 2, 2019 - Researchers synthesize peroxidase-mimicking nanozyme with low cost and superior catalytic activity
May 2, 2019 - Study results of a potential drug to treat Type 2 diabetes in children announced
May 2, 2019 - Multigene test helps doctors to make effective treatment decisions for breast cancer patients
May 2, 2019 - UNC School of Medicine initiative providing unique care to dementia patients
May 2, 2019 - Nestlé Health Science and VHP join forces to launch innovative COPES program for cancer patients
May 2, 2019 - Study examines how our brain generates consciousness and loses it during anesthesia
May 2, 2019 - Transition Support Program May Aid Young Adults With Type 1 Diabetes
May 2, 2019 - Study shows how neutrophils exacerbate atherosclerosis by inducing smooth muscle-cell death
May 2, 2019 - Research reveals complexity of how we make decisions
Collection of demonstration projects highlights value of patient engagement in research

Collection of demonstration projects highlights value of patient engagement in research

Does engaging patients in research projects improve health? A comprehensive collection of 17 innovative demonstration projects — from youth involvement in mental health services to suicide prevention, Indigenous health, children with complex medical needs and more — highlights the value of patient engagement in research.

Engaging Patients in Health Research: the Ontario Experience, a special patient-oriented research supplement in CMAJ (Canadian Medical Association Journal), features in-the-trenches experiences, tips and challenges from 17 IMPACT projects funded by the Ontario SPOR SUPPORT Unit (OSSU). It is a resource for researchers and others interested in this growing approach that involves patients and caregivers as partners in health and health systems research.

“The innovative, collaborative approach of these projects underscores Ontario’s role as a leader in putting patients first and in seeking ways to improve patient health and the way health care is delivered,” says Dr. Adalsteinn Brown, Chair, OSSU’s Board of Directors. “We expect that OSSU’s IMPACT projects will live up to their name as they will impact the way we deliver health care, from emergency services to mental health, hip fracture care to heart failure care and more.”

Lived experience of patients and caregivers can make health research more relevant to patient needs by focusing on patient-identified priorities, which can improve health and the health system.

Examples:

  • Youth-determined study outcomes — ability to function in daily life was the most important outcome in a study to help youth access mental health and addiction services, recommended by youth rather than researcher-identified symptom relief. (“Youth engagement in the YouthCan IMPACT trial”) Podcast
  • Novel recruitment — in a study looking at providing access to essential medicines, with the advice of patient partners, researchers hit the streets of Toronto wearing branded T-shirts to ensure diverse representation. (“Community members co-designing a trial of medication access”) Podcast
  • Partnerships are key — a study looking at diabetes in First Nations people involved a close partnership with Chiefs of Ontario, which co-developed the study with an Elder, First Nations patient navigators and researchers. (“Describing the process of ethical conduct of research in an Ontario-wide First Nations diabetes research project”)
  • Create a safe environment — people with lived experience helped design a smartphone app to help men seeking help after self-harm and at risk of suicide. A key lesson was “the need to create a safe environment where patients are able to share their personal experiences through the power of ‘testament.'” Flexibility and support were also important to allow patient partners to withdraw or rejoin the project depending on their mental health. (“Involving people with lived experience in research on suicide prevention”)
  • Lived experience of older adults and caregivers — the transition from hospital to home can be difficult for older adults with multiple illnesses and symptoms of depression. Older adult patient partners and caregivers contributed insights into the unique challenges facing them and their caregivers in a support program to help ease the transition. “Patient and caregiver partners have also helped researchers and trainees to better understand issues older adults face with transitional care.” (“Engaging older adults as partners in transitional care research”)

In 2014, OSSU issued a call to fund translational research projects that aimed to conduct Innovative, Measurable, Patient-oriented, Appropriate, Collaborative and Transformative (IMPACT) research to improve patient health in Ontario. The complete list of 17 IMPACT projects in pediatrics, mental health, Indigenous health, chronic disease and health systems research is available here.

“Just as the patient experience in clinical care is important, so too is the patient perspective in research,” says Dr. Diane Kelsall, editor-in-chief (interim), CMAJ. “Asking patients and families about what is important to them results in better research studies that address patient health priorities, which can benefit the health system. CMAJ sees patient-oriented research as an important, emerging research area, and we hope this supplement will be a resource for researchers.”

Funding bodies such as the National Institute for Health Research in the United Kingdom and the Patient-Centered Outcomes Research Institute (PCORI) in the United States are supporting patient-oriented research, along with the Canadian Institutes of Health Research (CIHR). Journals are increasingly asking how patients were involved in the research. CMAJ Open, a sister journal to CMAJ, has launched a patient-oriented research section to attract and publish this type of research.

“Engaging patients as partners makes them active, rather than passive, participants whose experience and ideas can enrich research projects,” says Frank Gavin, patient partner and chair, Citizen Engagement Council for the CHILD-BRIGHT SPOR Network. “We hope this publication will be a resource to anyone interested in conducting patient-oriented research.”

Tagged with:

About author

Related Articles