CREST.BD: The Collaborative RESearch Team to study

psychosocial issues in Bipolar Disorder

Meeting Proceedings Report

June 19 & 20, 2014 | Canmore, Alberta

2

2

Contents:

i. Network Members, Community Partners, Clinician Leads, Trainees & Staff

ii. Context

iii. Meeting Proceedings | Thursday, June 19th 2014

iv. Meeting Proceedings | Friday, June 20th 2014

v. Meeting Evaluation Summary

vi. Final Thought

3

3

i. Network Members as of June 2014 (Those in attendance underlined)

Network Leader: Erin Michalak, PhD, University of British Columbia, Vancouver, BC

Jehannine Austin, PhD, MSc, CCGC/CGC, University of British Columbia, Vancouver, Canada

Steven Barnes, PhD, University of British Columbia, Vancouver, Canada

Lesley Berk, PhD, Deakin University, Melbourne, Australia

Michael Berk, PhD, Deakin University, Melbourne, Australia

Colin Depp, PhD, University of California, San Diego, San Diego, USA

Elliot Goldner, MD, FRCPC, Simon Fraser University, Vancouver, Canada

Steven Hinshaw, PhD, University of California, Berkeley, Berkeley, USA

Catriona Hippman, MSc, CCHC/CGC, University of British Columbia, Vancouver, Canada

Rachelle Hole, PhD, University of British Columbia Okanagan, Kelowna, Canada

Sheri Johnson, PhD, University of California, Berkeley, Berkeley, USA

Steven Jones, PhD, Lancaster University, Lancaster, UK

Nasreen Khatri, PhD, CPsych, Rotman Research Institute, Toronto, Canada

David Kreindler, MD, FRCPC, University of Toronto, Toronto, Canada

Raymond Lam, MD, FRCPC, University of British Columbia, Vancouver, Canada

Sara Lapsley, Forensic Psychiatric Hospital, Coquitlam, BC

Mark Lau, PhD, RPsych, University of British Columbia, Vancouver, BC

Jamie Livingston, PhD, St. Mary’s University, Halifax, Canada

Fiona Lobban, PhD, Lancaster University, Lancaster, UK

Victoria Maxwell, BFA, Crazy for Life Co., Vancouver, Canada

David Miklowitz, PhD, University of California Los Angeles, Los Angeles, USA; Oxford University, Oxford, UK.

Roumen Milev, MD, PhD, FRCPsych(UK), FRCPC, Queen’s University, Kingston, Canada

Greg Murray, PhD, Swinburne University, Melbourne, Australia

Sagar Parikh, MD, FRCPC, University of Toronto, Toronto, Canada

Barbara Pesut, PhD, RN, University of British Columbia Okanagan, Kelowna, Canada

Melinda Suto, PhD, OT, Associate Professor, University of British Columbia, Vancouver, Canada

Ivan Torres, PhD, RPsych, Clinical Associate Professor, University of British Columbia; Research Scientist, British Columbia Mental Health and Addictions

Services, Vancouver, Canada

Samson Tse, PhD, Associate Professor, University of Hong Kong, Hong Kong

Vytas Velyvis, MA, PhD Candidate, Centre for Addiction & Mental Health; University Health Network, Toronto, Canada

Lakshmi Yatham, MBBS, FRCPC, MRCPsych (UK), Professor of Psychiatry and Associate Head of Research and International Affairs, Department of

Psychiatry, University of British Columbia, Vancouver, Canada

Eric Youngstrom, PhD, University of North Carolina, Chapel Hill, USA

4

4

Community Partners in Attendance:

Kaj Korvela, Executive Director, Organization for Bipolar Affective Disorders, Calgary, Canada

Ann Marie MacDonald, Executive Director, Mood Disorders Association of Ontario, Toronto, Ontario

Andrea Paquette, Executive Director, Bipolar Disorder Society of British Columbia, Victoria, Canada

Jennifer Verma, Senior Director, Collaboration for Innovation and Improvement; Canadian Foundation for Healthcare Improvement, Ottawa, Canada

Clinician Leads:

Joanna Cheek, MD, FRCPC, Psychiatrist, Island Health, Co-Lead Physician, University of Victoria Mood & Anxiety Clinic, Victoria, Canada

Rosalind Irving, M.Ed (Counselling Psych), Family Therapist, Community Psychiatric Services, Vancouver, Canada

Sandra Hale, BSc, OT, MSc, University of British Columbia, Vancouver, Canada

Rob Tarzwell, MD, FRCPC, Clinical Assistant Professor, University of British Columbia, Vancouver, Canada

Trainees:

Guillermo Perez Algorta, PhD, Lancaster University, Lancaster, UK

Laurent Coque, PhD, University of British Columbia, Vancouver, Canada

Cindy Holmes, PhD, Simon Fraser University, Vancouver, Canada

Emma Gliddon, PhD Candidate, Deakin University, Melbourne, Australia

Dennis Jasper, RN, BSN, University of British Columbia Okanagan, Kelowna, Canada

Emma Morton, PhD Candidate, Swinburne University, Melbourne, Australia

Alicia Semaka, PhD, (C)CHC, University of British Columbia, Vancouver, Canada

CREST.BD Staff:

Sally McBride, MPH, Knowledge Translation Manager

Nusha Balram Elliott, MA, Research Coordinator

Chandra Jade, BA, Research Assistant

5

5

ii. 2014 CREST.BD Network Meeting Report | Context

The Collaborative RESearch Team to study psychosocial issues in Bipolar Disorder (CREST.BD) is a network of researchers, healthcare providers and

community members. In 2010, CREST.BD was awarded three years of Network Catalyst - Knowledge Translation funding from the Canadian Institutes of

Health Research (CIHR) to support the development of the team into a national network.

Our vision is that we will contribute to a world where people living with BD enjoy optimized health, quality of life (QoL) and minimal stigma across their

lifespan as a result of tailored psychosocial and/or self-management interventions informed by effective psychosocial research and knowledge exchange

(KE) in BD.

Our values serve as guidelines for our conduct and behaviour as we work towards our vision. We value impact, integration, innovation, diversity, equity,

integrity and an orientation towards wellness and resiliency.

In Canmore, Alberta, CREST.BD held its’ third network meeting on

June 19th and 20th, 2014. CREST.BD network meetings are events

where the research network can connect and engage in face-to-

face dialogue about current projects, chart progress and focus on

strategic directions for research and knowledge exchange. A

planning team consisting of core staff and network members put a

significant amount of collaborative planning into organizing the

event. It was indicated in the 2013 Miami meeting evaluation that a

slightly longer meeting would be preferable; therefore, this year’s

meeting was held over 2 days.

This interactive report gives snapshots of the presentations made

by CREST.BD researchers, trainees and staff over the two-day

meeting, points to themes that emerged from the many discussions

facilitated, notes key action items that were decided upon, and

gives an overview of feedback from the meeting evaluation. For full

details of presentations please click on the links throughout our

interactive report to slides (via Slideshare) or videos (via YouTube).

6

6

iii – a. Meeting Proceedings | Thursday, June 19th 2014

Active Welcome | Erin Michalak, Sara Lapsley & Victoria Maxwell

The 24 attending members were welcomed by Network Leader Erin Michalak. Erin shared the purposes of the event: to create connections, share

progress, and create an energetic atmosphere for effective strategic planning and knowledge exchange. Erin also shared the previous year in review.

A decidedly lively haiku poem competition followed, hosted by Sara Lapsley, Peer Support Coordinator at BC Forensic Psychiatric Hospital, and Victoria

Maxwell, Mental Health Educator. Melinda Suto’s team won the competition with this thoughtful gem:

Recovery brings/ a flood full of hopes and dreams,/ muddy and unclear.

Year in Review | Sally McBride

Knowledge Translation (KT) Manager, Sally McBride, gave an overview of the CREST.BD

network’s KT presence over the 2013/14 year. Her presentation included numbers on reach by

online platform (e.g., website, Twitter, community events). Sally also included her analysis of

which of these is going well and which can be improved upon.

Highlights

37,390 view of the CREST.BD website

841 Twitter followers and 484 Facebook “likes”

4 community events with over 200 attendees in total

3,700 view of the Delphi study recruitment web page

5,170 views of the 13 presentations on our Slideshare profile

Strategic Plan Process Review | Erin Michalak

The CREST.BD Strategic Plan was introduced at the Toronto network meeting in 2012, with the themes of Research, KE, Structure and Governance

identified at the Montreal mini-meeting the same year. By 2014 the Strategic Plan had been consulted upon with the National Advisory Group and

submitted to the network for approval.

A draft annual workplan for 2014/15 was produced in the summer of 2014. A goal for the Canmore meeting was to fully populate the document with

input from all network members.

7

7

Introduction to 2014/15 Workplan | Greg Murray

Greg Murray reminded the group that the CREST.BD workplan is an agreed-upon summary of what the network will be working on in the short and

medium term. Throughout the Canmore meeting, core staff noted issues and ideas relating to the 2014/15 workplan. The workplan helps to maintain

cohesiveness and direction within the network.

Highlights

The workplan will help support people, time, money, infrastructure, knowledge and skill: the meeting is the time to incorporate missing pieces

The workplan should relate to mission and vision clearly and directly

Sustainability must be tackled in the workplan document

Optimising Work Plans | Jennifer Verma

Jennifer Verma is the Senior Director for the Canadian Foundation for Healthcare Improvement’s

(CFHI) Collaboration for Innovation and Improvement Program. Her role at CFHI includes

responsibility for start-up of large-scale health system improvement partnerships across Canada.

Jennifer shared best practices for strategic planning.

Highlights

Strategic planning benefits from people who respect one another for their range of qualities

Work planning requires a willingness to set, then try a course of action, knowing it will have

to be tweaked or even overhauled as events unfold

Vision and Mission are a cardinal compass point: North stays put, but the path to get there

(the work plan) may require correction en route

Which organizational activities yield the highest impacts and returns?

8

8

Update & Consult on Research Working Group | Greg Murray

At the 2013 meeting in Miami, the need was identified for a Research Working Group (RWG). The RWG is a forum within the network designed to

make strategic decisions around research and to give momentum to ideas. The RWG, which meets quarterly, has quickly proved to be an effective

engagement tool.

Update from Trainee Lead | Jehannine Austin

Jehannine Austin is the Canada Research Chair in Translational Psychiatric Genomics. She gave an update about where trainees fit in the network, and

possible directions for moving forward and improving the trainee experience.

Highlights

Trainees who find work and ‘graduate’ from their trainee positions shall be invited to

join the network as full members

May be beneficial to conceptualize definition of ‘trainee’ more broadly and be more

inclusive with boundaries of the definition to attract a more diverse range of

candidates (e.g., from business, journalism and non-traditional programs)

What metrics should we have in place to gauge outputs of trainees and ‘graduation’?

What can we use that information for? What institutional/CIHR guidelines exist?

Kickstarter Project | Steven Barnes

Steven Barnes is an Instructor in the UBC Department of Psychology. Steven shed light on

crowd sourced funding and generated discussion on a potential CREST.BD Kickstarter project.

Highlights

Venue to combine arts and research, including different perspectives and contexts

Initial video and strategic plan would need to be developed for any idea

Looking thoughtfully for an intern could be beneficial

9

9

PechaKuchas

Concise, 6 minute and 40 second presentations, the PechaKuchas presentation is an engaging way to structure a multi-speaker panel. 7 network members

and 1 trainee used PechaKuchas to give research overviews.

QoL Tool Project | Erin Michalak

Erin Michalak , CREST.BD Network Leader and Associate Professor in the UBC Department of Psychiatry, presented on the Quality of Life (QoL) Scale

Tool and on transforming the QoL scale into an online tool that will move it the hands of people living with BD. Watch Erin’s video

SHIP Project | Victoria Maxwell

Victoria Maxwell, Mental Health Educator, Consultant, Actor and Writer, and Researcher on the SHIP project, introduced the Ship project, a

comprehensive online Wellness Centre tailored for people who live with BD. Watch Victoria’s video

10

10

Delphi Study | Melinda Suto

Melinda Suto is Assistant Professor of Occupational Science and Occupational Therapy at UBC.

Melinda gave an update on the Delphi Self-Management project, including a summary of top

self-management strategies from Round 2 of the Delphi survey. Watch Melinda’s video

Bipolar Youth Action Project | Andrea Paquette

Andrea Paquette is Executive Director of the Bipolar Disorder Society of BC and Co-Lead

Researcher, along with Erin Michalak, on the Bipolar Youth Action Project (BYAP). Andrea gave

an overview of the BYAP, recently

funded by the Vancouver Foundation.

Watch Andrea’s video

MoodSwings 2.0 | Emma Gliddon

Emma Gliddon is a PhD Candidate in the Deakin University School of Medicine. Emma discussed

her learnings from working start to finish on the development process of the MoodSwings online

intervention, now in the recruitment stage. Watch Emma’s video

Integrated Anxiety Intervention Trial | Steven Jones

Steven Jones is Co-Director of the Spectrum Centre for Mental Health Research at Lancaster

University. Steven discussed treatment of co-morbid conditions in BD and lessons learned from

Spectrum’s Integrated Anxiety Intervention Trial. Watch Steven’s video

11

11

Metacognition Study | Ivan Torres

Ivan Torres is Clinical Associate Professor in the UBC Department of Psychiatry and a Researcher at BC Mental Health and Addictions Services. Ivan

shared preliminary data on metacognition and its place in determining quality of life. Watch Ivan’s video

ORBIT | Greg Murray

Greg Murray is Professor and Head of Psychological Sciences and Statistics at Swinburne University. Greg introduced the Online Recovery-Focused

Bipolar Intervention (ORBIT), a mindfulness-based self-help intervention designed for people living with late stage BD. Watch Greg’s video

12

12

iv – Meeting Proceedings | Friday, June 20th 2014

Breakout session: PCORI Application | Colin Depp (Chair)

A draft Letter of Intent was generated for the Patient Centred Outcomes Research Institute (PCORI)

Eugene Washington Engagement Award is a natural fit for the network. Sheri Johnson phoned in.

The Mood Patient-Powered Research Network (BD and MDD), under the direction of Dr. Andrew

Nierenberg is a registry of people living with BD and MDD, with the intention of integrating the patients

as a community as well as being a gateway to patient-driven research and trials. The Mood Network is

making good headway but is lacking in the community engagement piece required to recruit their

targeted 50,000 users in the next year.

CREST.BD has substantial knowledge and tools to

share with the Mood Network in terms of

community engagement. This would align with the

priorities of both networks and improve research

and capacity for community engagement for both

groups.

There was consensus on a CREST.BD peer researcher credentialed program, with the intention being

to train peer researchers in community engagement in mental health research. This would be

potentially done across four hubs in the U.S., with one CREST.BD network member and one trainee

attached to each site.

Breakout session: CREST.BD Book | Jamie Livingston (Chair)

The group shared thoughts about content, directions and ideas for a book authored by the

CREST.BD network. The results of the survey put forth prior to the meeting were circulated while

Jamie Livingston guided a discussion.

There was general consensus that a book produced by the network would be most helpful if directed towards healthcare providers and people who live

with BD and their supports. A natural fit would be for the content to include pieces on the network’s research.

A well-received idea was to target healthcare worker and community member audiences simultaneously in the format of a dialogue with alternating

chapters written by peer researchers or people with lived experience and their families and healthcare providers.

13

13

It was agreed upon that the book should not focus on CREST.BD’s history or formation. The book could give a snapshot of the network and point towards

the network’s greater body of work. The group agreed that the focus should be upon research made accessible and interesting through story telling.

Several network members noted the importance of cultivating diverse and international appeal in terms of authorship and applicability across cultures.

Discussion: Breakout session feedback | All

Empowered World Online Community (EWOC) | Steven Barnes

The Empowered World Online Community (EWOC) arose at the 2013 Miami meeting and grew into a larger idea involving the creation and support of

an online community/tool for people living with BD. Steven outlined the goals, requirements and potential challenges of a project such as this.

Watch Steven’s video

Highlights

EWOC would: involve community members in research and KE, disseminate

psychosocial treatments and interventions and address stigma and isolation

The site would be include a responsive design, integrated social media

capabilities, social networks and data visualizations

Multiple language support and user privacy considerations would be

important considerations

Team Building | Sara Lapsley

Sara Lapsley is BC Forensic Psychiatric Hospital’s Peer Support Coordinator and a

peer researcher in the network. Sara meticulously organized a scavenger hunt that

gave attendees a much-needed opportunity to sprint through the lodge grounds.

14

14

2014/15 Workplan | Sally McBride, All

To close, the group collaboratively developed a draft of a workplan for the upcoming year. Attendees noted action items, tasks and key ideas arising

from the meeting. Upon returning to Vancouver, the points from this discussion were incorporated into the workplan, which details the actions that the

CREST.BD network will undertake in the coming year. Both the 2014-2015 CREST.BD Workplan and the 2014-2019 CREST.BD Strategic Plan are

available on the CREST.BD website.

The Workplan hearkens back to the 5 key strategic priority areas detailed in the 2014-2019

CREST.BD Strategic Plan:

1. Research and KE Excellence

Create and advance knowledge and understanding of the psychosocial factors associated with BD to

contribute to health and QoL for people with BD through discovery, dissemination and application of

research within and across disciplines and sectors.

2. Community Involvement

Engage people with lived experience of BD and their supports in collaboration among researchers,

healthcare providers and other stakeholders to increase the usefulness of BD psychosocial research and

KE. Expand science on community involvement in BD research.

3. Capacity Building

Strengthen capacity for psychosocial BD research and KE within our network membership, partners and affiliates.

4. International Engagement and Recognition

Participate with global partners and affiliates to enhance reach and impact of BD psychosocial research and KE. Establish network as an international

leader in psychosocial BD research and KE.

5. Sustainability

Ensure that the Network is sustainable and accountable to its stakeholders.

15

15

v – Meeting Evaluation Summary

14 participants completed post-meeting evaluations. 93% indicated that opportunities for

networking and to suggest actions for moving forward after the meeting were good or excellent.

84% indicated that the meeting venue was good or excellent. 100% indicated that the following

aspects of the meeting were good or excellent:

opportunities to learn about CREST.BD research, present and future

opportunities to learn about new CREST.BD members

opportunities to learn about progress since 2013 meeting

opportunities for participation

Highlights of key learnings or impacts

“That our group is making some difference in the lives of people living with BD… and part

of our success is due to our community engaged methodology”

“Strengthened linkages with UK group”

“Discussion of the activities and research

projects in the context of the strategic plan

was useful”

Some suggestions for improvements or changes

“More structured tasks paired with someone I didn’t know well. Would like to hear more from the trainees”

“It would have been nice to review each section [of the workplan] in a systematic way, even though some items… are in progress.”

16

16

vi – Final Thought

ORBIT!

This report written by Nusha Balram Elliott, Erin Michalak and the CREST.BD Network.