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Ethics & Engagement across the Wellcome Trust Major Overseas Programmes

Engaging with communities’ worlds, or asking them to engage in ours? Ideas on participation & power from the Health Systems Global 2018 symposium

I had the great privilege of attending the Health Systems Global Symposium in Liverpool last October. GHBN-ers were there in force, with Sassy, Dorcas, Maureen and others running excellent, thought-provoking and packed sessions on ethics as part of the Health Systems Global Technical Working Group on the Ethics of Health Systems Research. You can read more about their sessions at http://www.healthsystemsglobal.org/blog/324/Refocusing-day-to-day-e... and http://healthsystemsresearch.org/hsr2018/ethics-health-systems-rese...

The symposium covered a wide range of topics and there were over a hundred sessions. I’d like to share some ideas on engaging with communities raised in two sessions, one on Meaningful partnerships for health: the role of communities, organised by The Global Fund to Fight AIDS, Tuberculosis and Malaria, and one on Health from whose lens? Learning from international experiences of grounding action and services for health and wellbeing inside community cultures, systems and control organised by the always-inspiring Rene Loewenson from the Training and Research Support Centre in Zimbabwe. Both sessions focused on the role of communities in health, including through participatory action research for TARSC. However, many of the ideas are relevant for community engagement in research in our contexts. Below are a few comments and points that stood out to me.

From Meaningful partnerships for health:

  • Kumanan Rasanathan, WHO: we need to look at whether the funder or programme is ready to engage with communities, rather than whether the community is ready for the intervention. This might mean, for example, having enough empathy and flexibility to adapt plans to suit communities.
  • Jérôme Pfaffmann, UNICEF: there are disempowering practices at community level with local power relations that reduce people’s capacity to speak up and share their views. Do not assume people have capacity to comment. Partners should assess the situation and the role of power, and build capacity to speak out where needed. Authorities often don’t recognise the value of community voice or see it as useful – you may need to address this so that participation can be meaningful.
  • George Ayala, The Global Forum on MSM and HIV: there are power inequalities and hierarchies within social movements, and between LMIC partners and funders. A first step in addressing these inequalities is recognising them.

From Health from whose lens?:

Rene Loewenson:

  • Consider what kind of consciousness and values the health system generates in people, and how this consciousness then shapes engagement with health systems (e.g. free care or fees may affect how people think about their right to health).
  • Participation is integral to people’s well-being. People see participation as important. TARSC’s experience is that participation is more effective when it is considered as an end in itself, not just as a means.
  • Power is central to community interactions with health systems. Power within is closely linked to collective power, including the self-confidence and consciousness to support action.
  • Where is the centre of gravity – are we bringing people into our services and our focus, or are we moving into theirs, and seeking to engage with their perspectives and realities?

Comments from Rene and others – my notes were partly from group discussions, so apologies that most points below are not attributed to specific people:

  • Empowerment and participation take time – we are hasty people and often say it takes ‘too long’, but we should drop the ‘too’ and just see it as a long process.
  • We should not think of ourselves as completely disconnected from the community – we are all humanity together and empathy is important (Godelieve van Heteren).
  • Recognise local specificities – we often look for one community knowledge and generalise, but it’s important to understand diversity.
  • Consider the community as an actor not a performance goal – we often objectify people and forget that they are actors with their own lives.
  • USA example where small grants for communities were used for social get togethers – officials saw this as the funds not being used for the intended purpose, but knowing each other is a starting point for collective action.
  • Example of listening sessions, with policy makers going to communities without any agenda except to hear local concerns.
  • The value of South-North learning – example of a Brazilian medic coming to the Brighton NHS and asking questions about power and transparency, which disturbed UK management and stimulated new thinking (Alex Shankland).
  • How do we engage with people who don’t want to engage with us? First step: think about why they don’t trust you.
  • People who feel too powerful may struggle to learn from others.

  

A few of the possible implications for community engagement in research:

  • More focus on training for and influencing researchers - encouraging/supporting them to create flexible research designs and enough time, and to be genuinely open to community input.
  • Don’t just ask communities for opinions but build their capacity to give opinions.
  • Think critically about power within research consortia and in researcher-community interactions (and perhaps in our internal interactions between PIs, frontline researchers and engagement practitioners) - identify the inequalities and ways to counter them and enable input from those with less power.
  • Consider how past experiences of research and our research approaches shape the way that communities perceive research and their role in it, and how this might then shape the way that communities do, or don’t, interact with researchers, share their views and seek to influence research.
  • Allow enough time, respect people as individuals and seek to understand their priorities and daily lives beyond interaction with research – perhaps joint social activities, listening sessions or some other approach that goes beyond one discussion focused on asking for their thoughts on planned research.

 

You can read more about the symposium and watch videos of the plenary sessions at healthsystemsresearch.org/hsr2018/symposium-coverage/ The TARSC session was based on a project called Shaping Health – more on their work at https://www.shapinghealth.org/, including excellent resources on monitoring and evaluation. TARSC is part of the Regional Network on Equity in Health in East and Southern Africa (Equinet). If you don’t already know the Equinet website, it’s a great resource for reports on many areas of health and PAR http://www.equinetafrica.org/

I am very grateful to both GHBN and LSTM for financial support that helped me participate in the symposium – thank you!

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Comment by Dina Rippon on January 21, 2019 at 13:54

Dear Kate, 

Thanks for this! It's really fascinating - so good to hear about the range of discussion. It sounds like it was a great conference and gave you a lot of food for thought. Thank you for sharing this with us! Dina

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