No one size fits all for measuring what matters: Supporting the use of PRO data in healthcare

Co-leads:

  • Richard Sawatzky
    Trinity Western University
  • Jae-Yung Kwon International Society for Quality of Life Research, University of British Columbia

Trainee:

  • Ronak Brahmbhatt
    Trinity Western University

Patient reported outcomes (PROs), which allow patients to report on their physical and mental health and wellbeing, are increasingly used in clinical practice and decision making. However, patients may not be consistent in how they interpret and respond to these questions.

Differences in the meaning of PROs across individuals or over time are known as differential item functioning (DIF) and response shift (RS). Ignoring these differences could lead to erroneous healthcare decisions. Although there are statistical methods to adjust for DIF and RS, these are complex to interpret and apply. To address this, our team is developing resources on DIF and RS (introductory video, webinar, and analysis software code).

Building on this prior work, we now propose to facilitate wider uptake of knowledge for interpreting and analyzing PROs by developing a webinar that includes case studies and an online interactive learning module specifically for clinically-oriented audiences (clinicians and decision support analysts).

Expected outcomes include:

  1. Increased awareness of DIF and RS and their implications for clinical practice and decision making, and
  2. increased ability to analyze and interpret PROs data while accounting for DIF and RS. 

 

Depression and heart disease: Promoting awareness and intervention across the continuum of care.

Co-leads:

  • Martha MacKay
    University of British Columbia 
  • Nardia Strydom
    Providence Health Care, Vancouver Coastal Health

Trainee:

  • Rachel Neal
    Concordia University

Heart disease patients have twice the risk of having depression compared to others. This results in poor quality of life and higher rates of death and complications. Treatment for depression can reduce depression symptoms, improve quality of life, and may lessen poor outcomes.

A first step to treating depression is diagnosis. We have implemented pre-discharge depression screening on the cardiac inpatient units at St. Paul's Hospital. This information is then sent to their primary care provider (PCP). However, we are unsure of the best way to get this information to PCPs. We also believe there are barriers to PCPs helping cardiac patients with depression, such as low awareness of its association with bad cardiac outcomes, little time for screening and few community mental health resources. We propose a 4-phase approach to address these barriers.

To start, we will solicit input from some PCPs (from urban and rural settings) on ways to receive information about depression screening of recently hospitalized patients, and the barriers faced in helping depressed cardiac patients.

We will then develop resources for both patients and PCPs, such as an infographic (patients) and web-based resources on the 'Pathways'site (PCPs), followed by implementation of the PCP communication process and evaluation of the web-based resource usage.

Finally, we will introduce our screening protocol to nursing leaders at BC's large cardiac centres, to promote broad uptake of this practice. 

#DebunkingDesire: Disseminating Facts of Women’s Low Desire Using a Coordinated Social Media Campaign

Co-leads:

  • Lori Brotto
    University of British Columbia
  • Rayka Kumru
    University of British Columbia
Trainee:

  • Julia O’Loughin
    University of British Columbia
  • Faith Jabs
    University of British Columbia

In national studies, 1 in 3 women report ongoing and bothersome problems with low sexual desire. Because sexual dysfunction is related to symptoms of depression, anxiety, relationship happiness, and general quality of life, this is a significant personal issue faced by women of all ages and life stages. Most women with sexual concerns will never speak to a healthcare provider due to embarrassment, and instead rely on online sources of information for help. The quality of online sexual health information is not consistent. There is an important role for social media in delivering scientifically-based information to women about sexual health. We plan to launch a social media campaign that will consist of specific and targeted information drawn from recent research.

Specifically, our team recently completed grant funded studies showing the role of chronic stress and childhood stressors in contributing to women’s low sexual desire. We have also completed a study showing the benefits of group mindfulness for improving sexual desire and other aspects of psychological well-being. We aim to reach women in our social media campaign with the goal of creating awareness and sharing information that might assist in their seeking improvements.

We will partner with individuals who have significant social media followings to amplify our messages. The ultimate goal of this project is to raise awareness about the prevalence, causes, and treatments about women’s sexual concerns.

“VACCINE BOOSTER TALK” short film for frontline healthcare professionals

Vaccine Evaluation Centre 

Co-leads:

  • Dr. Hana Mijovic
    BC Children's Hospital, Vaccine Evaluation Centre, Provincial Health Services Authority

Team Members:

  • Dr. Shovita Padhi
    University of British Columbia, Fraser Health
  • Constance Haselden
    Island Health

Trainees

  • Clara Rubincam
    Vaccine Evaluation Center
  • Emily Gemmell
    Vaccine Evaluation Center

Uptake of childhood vaccines in BC remains below recommended rates, contributing to resurgence of vaccine preventable diseases. Family physicians, nurses, midwives, obstetricians, and pediatricians can play an important role in vaccine counselling and facilitate timely and equitable access to vaccines for pregnant women and children in BC.

At the Vaccine Evaluation Center we have interviewed BC parents and healthcare providers about barriers and facilitators to vaccine uptake from infancy to school-age, with the goal of optimizing vaccine counselling and uptake in primary care.

Facilitators included: provider(s) consistently recommending vaccines from pregnancy through childhood and continuity of care with trusted provider(s). Barriers included: provider(s) not discussing vaccines or not expressing strong recommendations, poor continuity of care, and difficulties accessing healthcare services.

Given the variety of providers involved in the care of BC's children, we propose an interdisciplinary KT approach to share our research.  We will summarize our findings in a short film 'Vaccine Booster Talk' for frontline providers.  The film will be screened at 5 interprofessional education events, followed by discussion sessions.

This will provide an opportunity for providers to gain broader understanding of the factors influencing childhood vaccine uptake in BC and engage in interprofessional dialogue on improving counselling and facilitating uptake. 

 

Building on Strengths in Supported Housing and the Treatment of Mental Illness in BC

Research co-lead: 

  • Julian Somers
    Simon Fraser University, At Home Project, Homeless Intervention Program, Inter-Ministry Research Initiative 

Research user co-lead:

  • Darrell Burnham
    Coast Mental Health

Team members: 

  • David MacIntyre
    BC Non-Profit Housing Association
  • Dominic Flanagan
    BC Housing
  • Taryn Walsh
    Ministry of Mental Health & Addiction
  • Elenore Arend
    Ministry of Public Safety & Solicitor General
  • Colin Ross
    City of Vancouver, BC Justice Summit
  • Stefanie Rezansoff
    Simon Fraser University 

BC research has examined the effects of supported housing on mental illness, addiction, crime, public safety, community integration, quality of life, and total public expenditure. Local and international studies show that increased spending does not necessarily result in significant improvement for people with complex needs, and that effective interventions require specific coordinated approaches to service delivery. At present, no central source of support exists to ensure that relevant research is available to inform practices in BC.

This project will convene provincial partners who are responsible for addressing homelessness, mental illness, and addiction, and identify priorities for cross-sector coordination, implementation of best practices, and evaluation. Identified priorities will be reviewed with additional provincial stakeholders (e.g., municipal government, community-based housing & health service providers, patients & family members). Priorities and recommendations will be finalized by the project team along with recommended next steps and made available to the public via SFU web-based media and communications.

 Results will inform a multi-year plan for applied research addressing housing and mental illness in BC. 

Virtual Innovative health Strategies through Interdisciplinary co-Operative Network (VISION)

Research co-lead: 

Research user co-lead:

  • Thomas Noseworthy
    BC Academic Health Sciences Network (BCAHSN)

Team members: 

  • Dr. Riyad Abu-Laban
    University of British Columbia
  • Dr. Giuseppe Carenini
    University of British Columbia
  • Dr. Jim Christenson
    University of British Columbia, BC Emergency Medicine Network
  • Dr. Martin Dawes
    University of British Columbia, GenXys
  • Dr. Thalia Field
    University of British Columbia
  • Dr. Nat Hawkins
    University of British Columbia
  • Dr. Anita Ho
    University of British Columbia, Centre for Health Evaluation & Outcome Sciences
  • Dr. Richard Lester
    University of British Columbia, WelTel
  • Dr. Craig Mitton
    University of British Columbia, Centre for Clinical Epidemiology & Evaluation, VCH Research Institute
  • Dr. Panos Nasiopoulos
    University of British Columbia
  • Dr. Raymond Ng
    University of British Columbia, Data Science Institute UBC
  • Dr. Helen Novak Lauscher
    University of British Columbia
  • Dr. Frank Scheuermeyer
    University of British Columbia, St Paul’s Hospital
  • Dr. Mahsa Talebpourazad
    University of British Columbia
  • Dr. Hubert Wong
    University of British Columbia, Centre for Health Evaluation & Outcome Sciences, BC SUPPORT Unit
  • Dr. Eric Grafstein
    University of British Columbia, Vancouver Coastal Health, Providence Health Care
  • Dr. Ronald Heslegrave
    William Osler Health System
  • Dr. Deepak Kaura
    Joule Board of Directors, 1Qbit
  • Dr. Chad A. Kim Sing
    University of British Columbia, Vancouver Coastal Health
  • Dr. Douglas Kingsford
    Interior Health, BC Ministry of Health
  • Colleen McGavin
    BC SUPPORT Unit
  • Dr. Tom Noseworthy
    BC Academic Health Sciences Network
  • Dr. Don Sin
    University of British Columbia, Centre of Heart Lung Innovation
  • Dr. Sean Virani
    University of British Columbia, Canadian Heart Failure Society
  • Tina Cheng
    University of British Columbia
  • Michael Lai
    University of British Columbia
  • Sophia Ly
    University of British Columbia
  • Azzra Mangalji
    University of British Columbia
  • Ellison Richmond
    University of British Columbia

 Patient care today relies heavily on patients and caregivers coordinating their own records, leading to difficulties building comprehensive and accurate health records. Digitizing the patient journey, from using electronic records to tracking patients' health with portable sensors, are now conceivable to curate and accurately record health information and improve self-management. To begin transforming healthcare using technology-enabled healthcare approaches, commonly referred to as virtual or digital health, we need rigorous interdisciplinary research.

Virtual Innovative health Strategies through Interdisciplinary co-Operative Network (VISION) aims to advance research to develop and evaluate virtual and digital interventions in healthcare. With experienced faculty members, trainees, and research users (eg. patients, caregivers, policy makers, healthcare professionals, industry) from health, social, and natural sciences, together we can work to digitize healthcare.

Through this MSFHR grant, we will bring VISION members and experts outside of BC together to explore key areas of interdisciplinary research in digital health and convene a patient and caregiver advisory committee to guide our patient-oriented research path forward. 

 

Promoting shared decision-making for the treatment of heart valve disease in Canada

Research co-lead: 

  • Sandra Lauck
    University of British Columbia 

Research user co-lead:

  • Jacqueline Forman
    St. Paul's Hospital

Team members: 

  • Sandra Carroll
    McMaster University
  • Dr. Jennifer Baumbusch
    University of British Columbia
  • Dr. Anita Asgar
    Transcatheter Valve Therapy Clinic
  • Dr. Leslie Achtem
    Vancouver Transcatheter Heart Valve Program, St. Paul’s Hospital
  • Amanda Smith
    McMaster University 
  • Dr. Richard Cook
    Vancouver General Hospital
  • Michelle Tyler
    University of British Columbia, St. Paul's Hospital
  • Krystina Lewis
    University of Ottawa

After the age of 70, about 10% of British Columbians will develop a heart valve disease called aortic ('a-yor-tic') stenosis. Over time, the leaflets of the heart valve become harder and blood cannot pass through easily to travel to the rest of the body. This is like having a garden hose with a spout that cannot be loosened. The only treatment is to replace the valve. If this is not done, most people with the worse aortic stenosis will die within a year.

As of recently, this valve replacement can be done in one of two ways: either with open heart surgery (surgical aortic valve replacement) or using a small hollow plastic tube threaded through a leg artery or another way (transcatheter aortic valve replacement). Both ways have different risks and benefits, and many patients can have one way to the other.

The reason our group of clinicians, researchers and patients want to come together is to help patients and their doctors and other health care professionals decide about the way to change the valve together that is the right one for each patient. It is also important that this decision matches the patient's values and beliefs about their health and their goals. This is called shared decision-making.

Our goals are to look about what we know about the treatment of aortic stenosis and shared decision-making and study how we can use this information to improve the care of older British Columbians and Canadians who need valve surgery.  

Brain Exchange: Engaging Inter-disciplinary Perspectives to Support Women’s Brain Health

Research co-lead: 

Research user co-lead:

  • Shirley Weir
    Menopause Chicks 

Team members: 

  • Dr. Elizabeth Rideout
    University of British Columbia
  • Dr. Lori Brotto 
    Women’s Health Research Institute  
  • Ama Kyeremeh
    University of British Columbia
  • Wansu Qiu
    University of British Columbia
  • Kate Wahl
    University of British Columbia

Women are more susceptible to certain brain disorders, such as depression, anxiety, and Alzheimer's disease compared to men. Moreover, disease manifestation is different between the sexes. Yet, most research focuses primarily on males, which has contributed to the current knowledge gap and inequities in practice. Although new work has focussed on how biological sex alters disease trajectory and outcome, less is known about how the unique physiological and social challenges experienced by women influence brain health. What we do know is striking. For example, the physiological changes during pregnancy and postpartum alter susceptibility to brain disease, and barriers to access care can significantly affect the timing and accuracy of diagnoses in women.

This highlights the need for a comprehensive understanding of women's physiological and social challenges that are unique to women to improve health outcomes. Yet, most research has focussed primarily on males which has contributed enormously to the current knowledge gap and inequities in practice.

We will host a one-day Women's Health Conference to bring together multidisciplinary researchers and stakeholders to:

  1. engage in dialogue related to women's brain health issues,
  2. foster new collaborations, and
  3. establish a provincial Women's Brain Health Network that will build new research programs and offer essential student training in order to reduce knowledge gaps and inequities in accessing care. 

Improving Young Adult Cancer Care in Partnership with Young Adults and Cancer Care Allies in BC

Research co-lead: 

  • Cheryl Heykoop
    Royal Roads University

Research user co-lead:

  • Catherine Clelland
    BC Cancer Agency

Team members: 

  • Jennifer Cartwright
    BC SUPPORT Unit
  • Karine Chalifour
    Young Adult Cancer Canada
  • Nicol MacPherson
    BC Cancer
  • Lisa McCune
    BC Support Unit
  • Nicolette McGuire
    Research and Innovation – Ministry of Health
  • Morgan Price
    University of British Columbia, Innovation Support Unit 
  • Danielle Schroeder
    Callanish Society
  • Genevieve Stonebridge
    InspireHealth

In Canada, approximately 8000 young adults (aged 18 to 39) are diagnosed with cancer each year, representing 4% of cancer diagnoses annually. Currently, cancer care systems have limited capacity to meet the complex needs of young adults with cancer and young adult cancer care is generally underrepresented in cancer education and research. However, research indicates that young adults with cancer have a clear understanding of how their care could be improved and want to play an active role in doing so.

This C2 grant would support 20 young adults with cancer and 20 cancer care allies (health care professionals, decision-makers, researchers, and community organizations) in BC to come together for a two-day meeting to share experiences of young adult cancer care and to identify key research and practice priorities to improve young adult cancer care in BC.

Key outcomes include:

  1. strengthened relationships and partnerships between young adults and cancer care allies;
  2. identification of key research and practice priorities to improve young adult cancer care in BC; and
  3. the co-creation of a high-quality report and two knowledge products to share learnings and priorities widely.    

A Clinical Academic Partnership to Advance Team-based Practice in Reablement

Research co-lead: 

Research user co-lead:

  • Dolores Langford
    Center for Hip Health and Mobility (CHHM), Vancouver Coastal Health, Vancouver Coastal Health Research Institute

Team members: 

  • Darryl Caves
    Vancouver Coastal Health
  • Chris Nicol
    Vancouver Coastal Health
  • Dr. Patro Ariza-Vega
    University of Granada, Hospital Universitario Virgen de las Nieves
  • Dr. Ken Madden
    Vancouver General Hospital, University of British Columbia
  • Dr. Morgan Price
    University of British Columbia
  • Jane Burns
    Vancouver Coastal Health
  • Dr. Elissa Burton
    Curtin University
  • Lindy Clemson
    University of Sydney
  • Lena Fleig
    Medical School Berlin 
  • Christiane Hoppmann
    University of British Columbia
  • Paule Bellwood
    University of British Columbia

Reablement is a short-term intensive interdisciplinary approach to providing health care at home, with a focus on older adults post-hospitalization. Reablement emphasizes a person's autonomy and independence, but the model may pose implementation challenges within a team-based setting. To mitigate these factors requires a consistent training program (for fidelity) to adopt the concept of reablement, and develop skills and knowledge. To create an acceptable, feasible, and effective knowledge strategy requires co-designing the curriculum with the end users.

This study, grounded in behaviour change theory, is designed to work with frontline clinicians and researchers, to create a blended curriculum of online training, video scenarios, and group-based work. We will work within our established clinical academic partnership, to develop the curriculum over 12 months via a series of monthly webinars from experts in the clinical and research fields on topics related to delivering reablement. During the webinars, a facilitator will synthesize information on ways to strengthen team-based practice, maintain fidelity to the model, and support older adults' autonomy and independence.

We anticipate the following outcomes from this collaboration: a co-created curriculum of reablement, a consensus statement on behavior change strategies for reablement, KT capacity building for trainees, peer-reviewed publications, and a research agenda for next steps to advance reablement in BC.