You don’t often think of the words “data” and “party” in the same context, but at PAN we’re actively pursuing ways to make research exciting and relevant. To that end, we’ve now held two data parties for our community-based research study, Positive Living Positive Homes (PLPH). A “data party” is simply a gathering of people who are interested or who have a stake in a particular study. The goal is to make sense of research data in a collaborative way. Because PLPH is a community-based study, the idea of a data party was attractive because it would enable our team to bring together varied viewpoints from our community stakeholders. Having service providers, research participants, academics, and other community members in the room together to discuss our findings let us approach and use the data in a number of meaningful ways.
The PLPH approach
Data parties are not yet common practice in CBR, but we’re hopeful the trend gets picked up in the HIV sector in particular, as recent funding issues and the overdose crisis signal the need for communities to collaboratively look for solutions.
The PAN CBR team was introduced to the concept by Kylie Hutchinson during a webinar on participatory evaluation in June 2016, but data parties have been written about by others, including Nancy Franz, who described them as “enjoyable activit[ies] where those present make meaning out of data collected around an issue, project, or phenomena” (2013). The PLPH research team used Hutchinson’s ideas and adapted them to our own use. Primarily, we were interested in bringing data from our first wave of interviews with participants living with HIV to the community to find out:
- If we were on the right track in our preliminary analysis of interview transcripts
- If there were themes or issues we had missed in that initial analysis
- What resonated most with community members and why
- Which parts of the data we should dig deeper into for more detail
- How we should move forward with using the data in ways that will benefit the community
The process
About two months before each party, we sent out an online survey to help us mine the data appropriately so we could bring the most relevant information to party attendees. The survey responses also helped us structure the party – knowing about priority topics allowed us to better estimate the amount of time to spend on each one. For example, in Greater Vancouver the pre-party survey showed us that stakeholders were interested in learning about our findings around HIV-related stigma and housing, as well as how personal relationships influence housing. We were able to pull data on those themes from our findings, and present it on our “data placemats” in an interesting way that facilitated group discussion at the party.
Our party for the Greater Vancouver research site happened in February, and drew about 15 people who met for a whole day. The party in Prince George was in May and involved 19 people. One important aspect of the PLPH data parties was the inclusion of study participants. As key stakeholders with valuable input and first-hand experience of data collection, they need to be kept engaged throughout the analysis and knowledge translation phases so their voices remain at the forefront of the work.
Results!
We were gratified to hear from the folks at our party that we were well on track with our preliminary analysis. Even more gratifying was support for the action items to move forward with, including:
- A housing support toolkit, which will be adapted for both the Greater Vancouver and the Prince George sites (and likely Kamloops, too), comprised of a guide to accessing and maintaining housing in those cities, a self-assessment tool to help folks determine what kind of housing might suit them best, and a list of subsidized housing providers with information on application processes, likely wait-list times, contact information, and other helpful details
- In Prince George, the formation of a housing support workers network, which will meet regularly to troubleshoot housing-related problems for mutual clients, discuss issues of common concern, provide inter-agency support, and help avoid duplication of client services
We were also asked to provide PLPH findings to the Northern Health Authority, who is currently conducting a review of health services in downtown Prince George. We hope our data is helpful in contextualizing the specific health and housing needs of people living with HIV in that community.
Conclusions
Whether you call it a data party or something different, participatory analysis and knowledge-to-action planning are key ingredients in good CBR. Coming to conclusions about the data and how to use it – in concert with community stakeholders – just makes sense if research is to be relevant and useful. It was exciting (and a little nerve-wracking) to actually be present when people saw our findings for the first time. But this probably made our work better: traditionally, researchers publish their findings in journals and might never know who is reading it. With participatory analysis, we knew the feedback from our community would be immediate, and this forced us to carefully think through the impacts our results would have and present them in a way that was accessible and useful.
The PLPH team plans to hold another data party in its Kamloops site in August. If you’re in the interior, stop by to join us – for a data party, the more the merrier!
References
Franz, Nancy. 2013. The Data Party: Involving Stakeholders in Meaningful Data Analysis. Journal of Extension.51(1). Article # 1IAW2.
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Community Based Research at PAN
Positive Living Positive Homes Study
Questions? Feedback? Get in touch!
Heather Picotte, CBR Positive Living Positive Homes Manager, [email protected]