Patient Engagement (PE) Methods Cluster

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.

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Methods Cluster Visioning Workshop, February 2018
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Session at the BC SUPPORT Unit Conference, November 2017

 

Intro to the Patient Engagement Methods Cluster Video

Themes for Projects

Summaries of Cluster Projects

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 team:
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.

3. Diverse Communities Facing Multiple Barriers to Engagement in Patient-Oriented Research

Healthcare services and organizations are working to better meet the needs of patients and communities. One way to achieve this is to involve patients in research studies that help health care professionals make good decisions. This has become widely known as patient-oriented research (POR). As this kind of research evolves, it is important that we gain more understanding of the best ways to involve a diverse range of patients and community members, particularly those who may face multiple barriers to being part of research teams and projects, such as people with complex medical conditions or who experience housing or food insecurity. This project aims to study patients/community members and researchers who have participated in some form of POR. We are looking to determine helpful and meaningful ways of engaging diverse patients/communities in research in British Columbia. We will do this in three major steps. The first involves reviewing the literature to understand what knowledge exists about POR for patients/communities facing difficulties in participating. The second step involves interviewing 30-40 researchers and patient/community participants who live in different places in BC, come from different backgrounds and communities, and who have different kinds of experiences being part of research teams. The third step involves bringing this information together in order to develop some tools that might help other researchers to partner with patients facing multiple barriers. Our POR study team is co-led with patient and community partners and we will use their guidance to help us fully consider these complex issues.

4. Patient-engaged priority setting and health data in the Okanagan Nation

The Okanagan Nation Alliance (ONA) has identified mental health as a priority area for its communities. ONA governance and administration of mental health is very challenging because of an absence of data, and at other times only incomplete or partially relevant data is available. This study seeks to build upon Okanagan protocols for community decision-making to help address the challenges of Okanagan mental health data, by incorporating mental health patients in community decision making about mental health governance. Specifically, En'owkinwixw (an Okanagan protocol) will bring together patients, their families, health administrators, and relevant health practitioners to assess the current state of data and to envision a path forward for locally framed approaches to health data. This study will be framed by engagement with patients in a locally (ie Okanagan) specific way, which seeks to leverage Indigenous knowledge and approaches to ensure meaningful access to, and control over, data important to the health of the nation. The central output will be a greater understanding the significance of local context in Indigenous patient engagement (PE).

 

Project Lead(s): Braden Te Hiwi (UBC); Researcher Members: Mike Evans (UBC), Jeannette Armstrong (UBC); Knowledge User Members: Jennifer Lewis (ONA) and the Okanagan Wellness Committee

Team

Lead:

Dr_Erin_Michalak
Cluster Lead: Dr. Erin Michalak

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.