Do we really want to engage communities in our research?

[Gaston]

Dear friends,

Two weeks ago. I open my inbox. An invitation to a workshop near Chiang Mai. I wasn’t sure what to think when I rwas invited for the workshop of the UK-based Wellcome Trust on ‘Community Engagement: under the microscope’. The main topic was the engagement of the public and communities in bio-medical research. Research was not my area of experience. Would I be able to contribute and get value out of this 3,5 days time investment?

Well, the answer is a solid YES. Let me describe briefly the 4 areas that I learned most on that are relevant for the Constellation:

1. The world of research! I was fresh to this, but it’s very encouraging to see that especially Wellcome Trust explores deeply the question of community engagement, ownership and ethics in research. This issue is applicable to much of the development work as well. Do we just make communities aware of things? Or do we want them to understand exactly why we do certain interventions? Or do we even want them to develop a critical consciousness about all that is happening and the intention that each player has? Do we really want this or we prefer to see communities as passive recipients of our interventions? We know the answer in the Constellation’s values. When we answer this question, imagine a scenario that researchers are planning a research that includes your family, group of friends or neighborhood. What would you respond if you’re not the development actor or researcher, but the ‘target’ community?

2. A study on the Social Vaccine. We call the AIDS Competence Process the ‘social vaccine’. What if we could research the social vaccine with the same rigor as any other vaccine? And show the added value that community ownership makes to the response? We weren’t sure who would be interested in exploring such a research. The Wellcome Trust showed openness to explore this further through their Investigator Awards http://www.wellcome.ac.uk/Funding/Ethics-and-society/funding-scheme.... If you are interested reflect further on this idea and possible research question, please let me know ([e-mail]).

3. The use of Participatory Video. Wellcome Trust showed the results of an inspiring participatory video project in Kenya, Thailand, UK and Nepal. Thanks to some great interactive sessions, I realized the even bigger potential of participatory video in community work than what we explored so far in the Constellation.  The main breakthrough for me was the shift from a traditional communication model (source- message- channel- audience – effects – feedback- source) to a participatory communication model (a Venn diagram with Self-reflection of the group involved – finding common ground – involving a wider community – actions). The implications of this shift in thinking are big. We don’t record videos in communities to share necessarily with others. The process itself can be highly valuable and contribute to the local response and horizontal transfer to other communities. Also I learned about how the camera can make people more positive (less realistic?), the importance of a technically good result and how video can be used to increase confidence in a group setting.

4. The gap between Policy and Research/ evidence. At the Constellation, we have seen that evidence on the power of local/ community response is available in many places. An extensive external evaluation of UNAIDS and other actors are on our website. Now why doesn’t policy follow the evidence? This question applied to research outcomes and policy was discussed in the conference. Why don’t great Lancet studies lead directly to adoption in policy? A striking example in Pakistan showed how if we don’t involve the policy makers or the ‘targets’ of our research in the research design, the probability of adoption of recommendations will be very low. This showed me that for the study under point 2, we will need to involve the policy makers we want to address from the beginning. We plan to involve the most critical and skeptical minds in the HIV domain into the research design. What evidence would they like to see exactly and how can we make it as user-oriented as possible? Let me know if you want to think along with us.  

Finally, I have to say that the event was very well facilitated. I learned some new innovative facilitation techniques and the small group work, involvement of poetry, theatre and arts made it nice for both sides of the brain! A great thanks to Sian and the other organizers for making this possible.  

[Anuprita Shukla]

Hello Gaston, 

Thanks for sharing these points. Very crisp I must say. I completely agree to all your points here. Would just like to add a bit  particularly to the gap between policy & practice.

    Policy makers or donors will continue to create 'invited spaces' for community, unless there are mechanisms to provide 'evidence of community skills that fit into their agenda'. There are forums and platforms where communities are involved in various stages of a program , but as you rightly point out here the gap. For the point about what evidence  to make more user-oriented   :- As its well debated the' number game''  that donors rely on while choosing any program activities or measuring outcomes. According to me, there has to be a potential participatory M&E or lets say indicators that will serve purposes of both the donors and communities; There is clear distinction (some might overlap) of purpose of M&E for both groups , the donors are interested in capturing all program data and demonstrating the impact of program, where they can say xx number of lives saved because of xx amount funds; the communities-  need data to show that they work beyond numbers and the values and life skills imparted need to be captured. Thus there has to be innovative monitoring and evaluation system that will serve both groups and then the evidence could possibly be feed into practice. 

 

best,

Annu

[Rituu B. Nanda]

Dear Gaston,

 

I enjoyed your well written blog. thanks.

 

I have been engaged in participatory action research for the past one year. I am currently doing a literature review on participatory evaluation. Cousins gives three features of participatory evaluation decision control, selection of participants and depth of participation.

Gradually I am realising that participatory research is much more than data collection and analysis. It helps in reflection, empowerment, evaluation and eventually action. However it is very facilitator dependent and a good facilitator can stimulate communities as well as other stakeholders to see value in the process. I was reading about a community project on prevention of suicides among young people and how participatory evaluation process brought forth deeper issues related to suicide like unemployment etc and  strengthened the capacity of the community to avert suicides.

 

Please see my blog on clinical trial which excited me because the way the trial participants were engaged in the trial, fostered ownership among them. Namara from Ning was part of the technical team.

http://aidscompetence.ning.com/profiles/blogs/a-clinical-trial-thro...

 

On means of communication another tool we can explore is community radio which is used very extensively in Nepal where the terrain limits other means of communication.

 

I would like to join in the conversation on this issue.

 

Rituu