Conference Schedule

Moderators' Remarks
Rachael Wells & Viva Swanson

Welcoming Remarks: BC SUPPORT Unit Leadership
Minnie Downey & Stirling Bryan

Breakout session #1a         

New Virtual Platforms to Support POR

This session will demonstrate highlights of 6 new platforms that have been recently launched to support patient-oriented research in BC. Participants will be exposed to high level functionality of each platform to be better informed about how each can be used in a POR environment.

1. Data Scout: Sarah Kesselring
2. BC Health Research Connection Project/REACH: Amanda Chisholm
3. BC Emergency Medicine Network: Sharla Drebit
4. Clinical Trials BC: BC Clinical Research Showcase: Alison Orth
5. REDCap: Elodie Portales-Casamar
6. BC SUPPORT Unit’s Electronic Communities of Practice: Noreen Frisch

More details for this session

Host: Alison Hoens, BC SUPPORT Unit Provincial Hub

Breakout session #1b 

Patient Partner Compensation: Lessons Learned*
Presenters: Minnie Downey, Colleen McGavin, and Sunny Loo

While showing appreciation for study participants through honoraria and gifts is common  practice in health research, this is not routinely done in respect to patient partners, and there are varying opinions on the subject.  As a progressive organization and leader in the BC health research landscape, the BC SUPPORT Unit has adopted the stance that it is important to show appreciation beyond reimbursement by offering compensation. In February 2018, after extensive consultation with stakeholders, the SUPPORT Unit implemented a Patient Partner Appreciation Policy. In this session, we will share our policy, describe how we went about developing it, and discuss what we learned and are still learning as the policy gets implemented. We intend to leave lots of time for discussion.

Host: Larry Mroz, BC SUPPORT Unit, Vancouver Centre

Breakout session #1c

Lessons Learned: K* for P* (Oral Presentations)

K* is a term used to describe the many processes of getting research & evidence into policy/ practice which includes knowledge management/translation/exchange. These oral presentations focus on different aspects of K* within the different forms of research that include Patients.

1) Patients' and healthcare professionals' resource preferences for a knowledge translation toolkit for hip and knee replacement rehabilitation. (10 minutes)
Presenter: Marie Westby
Q&A (5 minutes)

2) Improving Mental Health Act rights advice in BC: a patient-oriented integrated knowledge translation project. (10 minutes)
Presenter: Iva Cheung
Q&A (5 minutes)

3) Fostering Support, Networking, Education and Sustained Engagement in Long-term Care: A Research Co-Creation Project with Families (10 minutes)
Presenter: Jennifer Baumbusch
Q&A (5 minutes)

Open discussion (15 minutes)

More details for this session

Host: Brittney La Pietra, BC SUPPORT Unit Fraser Centre

Breakout session #1d   

Giving voice to our patients: Using and reporting on patient-centred measures

This interactive workshop will serve as an introduction to patient-reported experience and outcome measures (PREMS and PROMS), and will include innovative examples of how results are reported and used in British Columbia to engage frontline leaders, clinicians, policy makers and others to focus both care and program planning efforts on what is important to patients.

Presenter: Richard Sawatzky

Host: Wendy Petillion, BC SUPPORT Unit, Interior Centre

Moderators: Erika Belanger & Tamara Reichert

Introduction: Lori Last

Plenary Speaker: Simon Denegri: Challenging cultures, changing systems - the UK's journey in public involvement in health research
National Institute for Health Research (NIHR), United Kingdom
National Director for Patients and the Public in Research

Simon Denegri's talk will look at the rise of public involvement (PPI) in health research in the UK. He will describe the leadership role that the National Institute for Health Research (NIHR) has played in advancing and promoting public involvement over the last decade. He will also bring the story up-to-date by exploring what recent initiatives such as the development of UK PPI standards mean for the wider health research system. Reflecting on the UK's experience and lessons learned he will set out future challenges and opportunities for an increasingly international movement.

Breakout session #2a

BC SUPPORT Unit Methods Clusters: A living lab of learning
Presenters: Stirling Bryan; Alison Hoens
Panel of Methods Cluster Leads: Nick Bansback, Leanne Currie, Linda Li, Erin Michalak, Rick Sawatzky, David Whitehurst, Hubert Wong

This session will provide an opportunity for attendees to hear about key lessons learned from the launch and development of the BC SUPPORT Unit Methods Clusters. The mandate of the clusters is to advance the evidence base of scientific methods, within the context of patient-oriented research, by fostering communities of BC-based methodologists and other stakeholders to undertake methodology focused projects. Leads from each of the 6 clusters will share their ‘biggest wins’ and ‘biggest challenges’, followed by a panel discussion highlighting lessons learned. The session will conclude with an opportunity to address session participants’ questions.

Host: Kelly Moran, BC SUPPORT Unit Hub

Breakout session #2b

Lessons Learned: Patient and Family Experiences
(Oral Presentations)

How do patient and family caregiver health care and illness experiences help inform research? In this research-findings presentation session, you’ll hear about how this happened in several research projects:

• How patient and family experiences of primary care help informed selection of research priorities;
• How parents experienced the timelines involved in genetic testing and diagnosing of their children and helped improve communication and reduced anxiety;
• How living with a chronic condition helped inform development of medication adherence guidelines;
• How measurement of patient experiences has engaged research partners.

1. The PREFeR (PRioritiEs For Research) Project: Results from a multistage patient priority setting project for primary care research in British Columbia (10 minutes)*
Presenter: Alexandra Warren
Q&A (5 minutes)

2. Participants as Partners in Research: Communicating a timeline to research participants for results with a 'fuzzy ending' (10 minutes)*
Presenters: Nicole S.Y. Liang, Isabel Jordan, Kelsey Ohs
Q&A (5 minutes)

3. Exploring Strategies to Support Medication Adherence in Patients with Inflammatory Arthritis: A Patient-Oriented Qualitative Study Using an Interactive Focus Group Activity (10 minutes)*
Presenter: Mary De Vera
Q&A (5 minutes)

4. Development and initial validation of a questionnaire to assess the quality of patient engagement in research
(10 minutes)
Presenter: Clayon Hamilton
Q&A (5 minutes)

More details for this session

Host: Larry Mroz, BC SUPPORT Unit, Vancouver Centre

Breakout session #2c

Finding Patient-Oriented Research in PubMed and Beyond
(Workshop)
Presenters: Ursula Ellis & Helen Brown

Two health librarians will demonstrate search techniques and tools for finding patient-oriented research, including: search filters for PubMed PCORI's Engagement in Health Research Literature Explorer. The instructors will also discuss open access initiatives making articles freely available to the public, and the increasing use of lay summaries as a knowledge translation tool.   

Host: Michelle Duffy, BC SUPPORT Unit Hub

Breakout session #2d

Don't categorize me or my sexual choices': Lessons learned for patient-oriented sexual health research by, with, and for women living with HIV (Panel)
Presenters: Valerie Nicholson, Peggy Frank, Mary Kestler, Angela Kaida

Women comprise nearly one-quarter of people living with HIV in Canada, but their health and social priorities are under-represented in HIV research. This panel of diverse stakeholders will highlight lessons learned from engaging in patient-oriented research related to sexual health among women living with HIV (WLWH), from a sex-positive and critical feminist lens. Stakeholders will discuss their engagement in research on the criminalization of HIV non-disclosure and 'Undetectable=Untransmittable' (U=U) as two opposing HIV prevention strategies. Visual representations depicting the results of patient-centred research will be displayed as a PowerPoint loop and an art gallery of life-sized Body Maps (visual narratives depicted through images and symbols). Angela Kaida will discuss the feminization of HIV in Canada, including the under-emphasis of sex-positive research, and the rationale for patient-oriented research studies by, with, and for WLWH. Focusing on the gendered impacts on sexual health, she will discuss research on the criminalization of HIV non-disclosure in Canada and the global U=U campaign, which disseminates research evidence that with a suppressed viral load, people living with HIV have effectively no risk of transmitting HIV. Peg Frank  will emphasize the critical need for community-driven research approaches to investigate the impacts of HIV non-disclosure laws on the safety and health of WLWH, including risks of violence against women. She will share her experiences as a WLWH and peer researcher, whose sexual life is 'under surveillance'. Valerie Nicholson will share experiences working in sexual health and HIV research; and how the U=U campaign is helping many people living with HIV reclaim their sexuality. She will highlight how being meaningfully involved in research has helped her to fight stigma and celebrate the sexuality of WLWH. Mary Kestler will discuss experiences working as a physician to support women's healthy sexuality, and how the criminalization of HIV non-disclosure impacts her ability to support women.  

Host: Jenny Cartwright, BC SUPPORT Unit, Island Centre

Wrap-up Panel Discussion
Moderator:  Davina Banner

Panelists will discuss the following questions, and will entertain questions and dialogue from the audience, during this interactive session.

• "What is your single most important lesson learned from your past experience and from the conference?"
• "Based on these lessons, what would you tell someone just starting out?"
• "Based on these lessons, where do we go from here?"

Panelists:
Bernadette Pauly, Simon Denegri, Stirling Bryan, Fred Cameron, Paige Phillips

Networking wine & cheese reception (no host bar; hors d'oeuvres provided)

POSTER SESSION and VOTING FOR BEST POSTER (Poster winner will be announced via social media and the BC SUPPORT Unit newsletter and website)

More details for this session