What is Patient Engagement?
Patient Engagement can be understood as meaningful and active collaboration in governance, priority setting, conducting research, and in summarizing, sharing, and putting the knowledge gained into action (i.e., knowledge translation). It is important to note the term ‘patient,’ as applied here, is over-arching and inclusive, referring to people with lived or personal experience of health conditions or issues, and the people who support them, such as family members, friends and informal caregivers.
What is the mandate for the Patient Engagement Methods Cluster?
As the most recently established of the six methods clusters of the BC SUPPORT Unit, the mandate of the Patient Engagement Methods Cluster is to spearhead innovative, provincially-focused advances in patient engagement research methods and approaches. We will create the establishment of a community of methodologists, who, hand-in-hand with vital stakeholders, will collectively undertake projects which advance this area of science.
What is the current status of the Patient Engagement Methods Cluster?
This cluster has passed its initial phase of stakeholder consultation (read the report here). Input from participants at a visioning workshop (February 2018) was united with that heard during webinars, teleconferences, social media events, and individual meetings to inform potential themes and project ideas that will drive forward methodological developments in patient engagement in patient-oriented research, both within, and beyond British Columbia.
Intro to the Patient Engagement Methods Cluster Video
Themes for Projects
- Methods Cluster Visioning Workshop Graphic Recording (high-resolution)
- Patient Engagement Tweetchat: view a compilation of tweets from a Tweetchat held on February 1st, 2018.
- Post Planning Event Webinar Recording:
Summaries of Cluster Projects
1. Bridging the digital divide and opening access to online research opportunities in youth and young adults living with mental illness in British Columbia
One in four young people in British Columbia (BC) experience a mental health issue each year. This project will develop methods to engage youth in health services research and system reform by exploring the “digital divide”. It has been identified that investments in health care technology may have big potential to help young people with mental illness find and receive care they need. The objective of this project is to understand and dismantle the barriers to accessing digital information, research and communication technologies for youth with mental illness in BC. There will be five main outcomes of this study: 1) a publication of the digital divide among at-risk youth; 2) published qualitative study exploring barriers to utilizing the internet, accessing e-mental health technology, and engaging in research online among at-risk youth; 3) a model for describing the factors of BC youth that predict access and use of digital technologies for health, 4) a pilot digital literacy curriculum that can shared by youth peers, and 5) a paper describing the methods for engaging youth with mental illness in research. These outcomes will be a novel contribution to the evidence about youth engagement in health services research. We believe that this contribution to engagement methods will help set a standard for including youth with mental illness in research, so as to ultimately improve health outcomes for young people and begin to address mental healthcare reform.
Project leads: Dr. Skye Barbic, Head Scientist, Foundry; Assistant Professor, UBC, Department of Occupational Science and Occupational Therapy, Dr. Shelly Ben-David, Foundry Scientist, Assistant Professor, UBC Okanagan, School of Social Work. Youth research members: Alicia Raimundo (Foundry Online), Nancy Zhao (Foundry), Andrea Vukobrat (Foundry). Additional Research Members: Dr. Steve Mathias (Foundry Executive Director, Centre for Health Evaluation and Outcome Sciences), Dr. Amy Salmon (UBC, School of Population and Public Health), Dr. Julie Robilliard (BC Children’s Hospital). Knowledge user members: Pamela Liversidge, Dr. Karen Tee, Julia Hayos, Michelle Carter, Stephanie Gillingham, Andrew Tugwell, and Michelle Cianfrone.
2. Methods for Supporting Diverse Patient Engagement in Research in a Diverse World: Co-Creation and Evaluation of Interactive Educational Modules
Online platforms can be a convenient, cost-effective and enjoyable way to learn about health research; however, not a lot of content is co-created by researchers and patients, which is a missed opportunity to potentially improve the quality of content and promote research engagement.
This project will develop and test five online educational modules with the aim of supporting engagement of diverse people in health research. The first module will provide an overview of current knowledge and tools for supporting diverse people to engage in research. The second module will focus on LGBTQ2+ communities. The three remaining modules’ focus will be determined by the results of an environmental scan and consultation exercise with BC SUPPORT Unit stakeholders – i.e. where are the most pressing gaps in knowledge and tools to support the engagement of diverse people in research in BC? And how can we help fill them? In this 18-month project, we will identify teams of individuals to lead module development, ideally, in teams co-led by a researcher and one or more patient partners. The teams will be supported by project staff and software developers, and the resulting modules will be evaluated in a pilot research project. The project is expected to provide new knowledge and tools on how best to support diverse people and communities to engage in health research in BC.
Project Lead(s): PE Methods Cluster Lead Dr. Erin Michalak, Dr. Steven Barnes, Department of Psychology, UBC. Researcher Members: Dr. Rachelle Hole, Department of Social Work, UBC-O. Others TBD. Trainees: Linnea Ritland; others TBD. Knowledge User Members: Ryan Tine and Beverley Claire Pomeroy (LGBTQ2 module); others TBD.
Who to Contact
Knowledge Translation Specialist, Methods Clusters: Amber Hui
Dr. Michalak’s background is in psychology, with a PhD awarded from the University of Wales College of Medicine in the UK. Her research expertise lies in patient-engagement in research, Community-Based Participatory Research, knowledge translation, bipolar disorder, quality of life, eHealth/mHealth and implementation science. Dr. Michalak brings valuable health research experience to the Unit. Her research has been well supported by organizations such as the Canadian Institutes of Health Research (CIHR) and the Michael Smith Foundation for Health Research. She is the founder and leader of the Collaborative RESearch Team for the study of psychosocial issues in Bipolar Disorder (CREST.BD, crestbd.ca), a CIHR-funded Canadian network dedicated to collaborative research and knowledge exchange in bipolar disorder, and Program Director for the Asia Pacific Economic Cooperation (APEC) Digital Hub for Mental Health. Additionally, she has published more than 100 scientific articles and several books and book chapters.
To find out more about Erin Michalak, please click here.