Processes, Relationships and Evaluation in Participatory Research and Indigenous Health Research

PRECONFERENCE WORKSHOP

NAPCRG’s 37th Annual Meetings. Preconference workshop, held Saturday, November 14, 2009 at
the 207 Longhouse, Kahnawake Mohawk Territory, Quebec, Canada.

Hosts:
Kahnawake Schools Diabetes Prevention Project (KSDPP)
And
Participatory Research at McGill (PRAM)

Participating Projects:

• High Plains Research Network, Colorado
• Walpole Island First Nation and The University of Western Ontario Research Partnership
• Go Ward One - Community-Academic collaborative, Columbia, Missouri
• Herzl Family Practice Centre, SMBD-Jewish General Hospital, Montreal, Quebec
• HYPE: Healthy Youth Peer Education, Allentown, PA
• Kahnawake Schools Diabetes Prevention Project (KSDPP), Kahnawake, Quebec
• Partners in Research, Minnesota
• Sleep For Success, McGill University and Riverside Schoolboard, Montreal, Quebec, Canada
• Healthy Children, Strong Families, and Supportive Communities, Wisconsin
• Taking Neighborhood Health to Heart (TNH2H), Colorado
• Primary Health Care: Engaging the Métis Nation, Saskatchewan
• Point St.-Charles YMCA and Paula Bush, Montreal, Quebec
• Women In 2 Healing, British Colombia

 

Processes, Relationships and Evaluation
in Participatory Research and Indigenous Health Research

This preconference was an exciting time to share skills, tools, and ideas for community engagement and participatory research.  This conference was very different from many conferences as we sought to hear more community voices, teach everyone new skills, and share successful strategies for engaging communities in research.

We received outstanding answers to the questions posed in the call for presentations, requesting that each participating group answer those questions which applied to their partnership. Our intention was for these presentations to be short, succinct, and focused on the specific answers to our questions (based on original abstract submission). Presenters for each question were chosen so that we could get a cross section of groups, answers, ideas, and strategies.

All presentation slides were loaded in order ahead of time, and each group stood and present their answers in the order noted below. This provided an engaging collaborative circle of sharing. No experts up front. We were all experts in the circle. This structure change and the tight parameters we’ve placed on each presentation stems from the desire to hear as many points of view from as many experts as we can in a single day.

Below you will find the agenda and presenters. Everyone presented in the first section on “Who Are We” and the final section on “Celebrating Engagement”.

With consent, the day was recorded and shared, The tapes will be analyzed for themes, information and useful tools with the goals of adding evidence to the 1998 NAPCRG Policy Statement, as well as developing a useful tool kit, reports and publications.

AGENDA

Click here for Morning Slides

 Video Section 1 (Opening, Welcome and Introductions)

9:00    Opening Amelia McGregor, Mohawk Elder
            Welcome Dr. Ann Macaulay, Director, PRAM
            Agenda Review/ housekeeping   Alex M. McComber Emcee/ facilitator

9:15     Introductions    (13 Groups)

Each group had 2 minutes and 2 slides

1. Who is the team i.e. academic and community?
2. What is your research question?

 Video Section 2 (Finding Community)

9:50     Finding Community   (8 Groups)

Each group had 3 slides and 4 minutes to describe how the project found partners; we often hear this is a barrier to participatory research and community engagement.

1. Kahnawake – the community invited the researchers
2. Sleep For Success – invite from school board – be prepared for when a community member approaches you.
3. Walpole Island – community approached researchers
4. Herzl – advertised through posters
5. HYPE – youth – how did you find and how do you work with youth?
6. Healthy Children, Strong Families – multiple community groups
7. High Plains RN –Multiple communities. Cold calls. A friend of a friend of a friend,   liaisons.
8. TNH2H – 5 neighborhoods - recruitment through focus groups

 Video Section 3 (Building Trust; Committed Engagement; Communication)

10:40   Building Trust   (5 Groups)

Each group had 2 slides and 5 minutes max to describe how trust was built in the partnership.

1. Women into healing
2. Herzl mission statement
3. YWCAs acceptance of Paula into the Centre
4. TNH2H – how do data help you build trust?

11:05   Committed Engagement   (2 Groups)

Each group had 2 slides and 5 minutes to describe how commitment from all partners was assured

1. Kahnawake – written agreements – share
2. Walpole Island – formal MOU- share

11:20   Communication    (3 Groups) 

Each group had 2 slides and 5 minutes to describe communication efforts

1. Healthy Children, Strong Families – each tribal CAB was surveyed to collect feedback – share
2. YMCA – short informal face to face, email
3. Go Ward One – monthly lunch

 Video Section 4   (Morning Q and A)

11:35   Q&A, Discussion   Facilitator: Drs. Judy Peters and Carol Herbert

            Discussion of the morning sessions

Click here for Afternoon Slides

 Video Section 5 (Roles)

1:00     Roles   (4 Groups) 
           
Each group had 3 slides and 5 minutes to describe the roles for the community and academic partners in your research.

1. Go Ward One – community orientation to values and realities of community.
2. Partners in Research – Trained community members in research – share the curriculum
3. High Plains RN – don’t ask community members to do too much academic stuff. And academic folks should not overdo their community stuff
4. Métis Nation - Saskatchewan – voice of the community to the govt.

 Video Section 6 (Essential Elements, Showing Value, Equity; Influencing the wider community)

1:25     Essential Elements, Showing Value, Equity (7 Groups)

Each group had 4 slides and 5 minutes to describe the essential elements listed in their section.

1. Core Values: Women into Healing (10 minutes)*
2. Shared Decision-making: Métis Nation - Saskatchewan – Métis people provide leadership
3. Shared Decision-making: HYPE –project changed based on the voice of the kids.
4. Shared Decision-making: Herzl - Consensus – how do you do this? List of priorities. Pt satisfaction. And implementation of these priorities.
5. Education: Partners in Research – trained community members
6. Shared Resources: Go Ward One – shifting funds
7. Show up: Kahnawake –sustaining through times with and without money.

2: 05    Influencing the wider community (2 Groups)

Each group had 2 slides and 5 minutes 

1. High Plains RN - NIH CTSA grant., thesis committees, teaching
2. Women into Healing – changing society

 Video Section 7 (Other)

2:35     Other
           
Each group had specific slide and time limitations listed below.

1. Progression From Advisors to Actors: Healthy Children, Strong Families – CAB as advisory board v. action team – transition from advisor to action. (6 minutes 4 slides)
2. How does CBPR result in capacity building and facilitating? Voice – Métis Nation - Saskatchewan (6 minutes, 4 slides)
3. Evaluating the partnership; Sharing the tools: Gruber  (10 minutes, 6 slides)
4. Strategies for a Successful Partnership: Parry et.al. (10 minutes 10 slides)
5. HYPE – documentary film: “Title” (15 minutes) [Promotional trailer available on the HYPE website]

 Video Section 8 (Celebrating Engagement; )

3:30     Celebrating Engagement      (13 groups)

Each group had 1 slide and 2 minutes max to describe one successful outcome 

 Video Section 9 (Afternoon Q and A; Summary and Closing)

4.00     Q&A, Discussion & Next Steps  Facilitators: Jack Westfall and Maret Felzien

4:20    Summary and Thanks  Dr. Ann Macaulay
            Traditional Closing  Amelia McGregor