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Crossing the line: UK activists team up with health officials

Marian Barnes
6 January 2010

In a city in the UK with a troubled political history, residents in one neighbourhood discovered that the Health Authority was planning to close their health centre, so they mobilised and undertook research to stop the closure.

The residents fondly recalled the campaign: how they had developed new skills, had fun and succeeded. They talked about the stories they heard when interviewing local residents and how they were able to use those stories and other evidence they collected to convince the ‘officials’ that they had got it wrong – that the centre was needed.

The health centre stayed open and a new general practitioner was recruited to work there. Inspired by their success, residents continued working to improve health services in the area. Six years later, however, the group was frustrated about the lack of support from health service officials.

Within the health services, the community had a number of champions who were committed to public participation, but the cynicism toward officials ran deep among residents; cooperation would not be easily forthcoming.

An opportunity for funding from the National Lottery provided a way forward, and the resident group decided to bid for a Healthy Living Centre that would play a more proactive role in promoting preventative health. To qualify for the bid, they had to reconstitute themselves as a health forum, with some members becoming trustees and taking on responsibility for financial affairs. The health forum members included local residents, people working for the National Health Service and other local agencies. But for residents, some of the joy of the work had been lost in the new partnership.

One woman – thinking creatively about how to promote health in the community –came up with ideas for using nearby wasteland to grow vegetables so people could get access to fresh food without having to travel miles to a supermarket. Her ideas, however, were pushed aside. The local resident who chaired the group was focussed on concluding negotiations about, for example, rent charges paid by general practitioners based in the centre. Local ideas and creativity were no longer seen to be as important.

This case study looks at what can happen when people who see themselves as an opposing force to government then try to work with and within official spheres of engagement. How do people come to take part in these initiatives and what kind of dialogue takes place within them? The case shows that the potential for change can be limited by institutional and political contexts and by unequal power relationships, though by recognising these obstacles, officials and citizens who share a commitment to a goal can find more effective ways to cooperate.

Whose participation?

Public participation in the UK has had an increasingly high profile since the election of the New Labour Government in 1997. Participation has been touted as a way to improve policy making and service delivery, but also as a catalyst for democratic renewal with its ability to create active, responsible citizens. In this context, it is increasingly difficult to make a clear distinction between officially sponsored participation and autonomous action, between participation as an instrument used by institutions and participation as a right of every citizen.

Indeed, the same citizen groups who are mobilising themselves to be heard in spaces where they were not invited are also taking a seat in sanctioned spaces at the request of officials. This means that boundaries between groups can become blurred, and local governments may end up diluting autonomous action when they try to harness local energy for social change.

From activist to participant

In an area of the UK with a strong history of activism, a group of people campaigning to improve health local services were drawn into a formal partnership with officials from local government and the National Health Service.

The forum they created together combined a diversity of experience. Professionals with a technical background were expected to cooperate with members who had direct experience of low incomes, joblessness, poor health and disability. The residents who had fought to preserve their clinic had learned that such experiences offer valuable knowledge that technical experts do not possess. But they also learned that, to succeed, they would have to learn the institutional ’rules of the game’ and become technical experts themselves.

In the process, the group had moved from oppositional action to trying to work in partnership with the Local Health Authority and officials. It became a formal entity, but it then struggled to retain a committed membership. There were several frustrations. Inadequate public transport and difficult access in a hilly area had an influence on who could attend the meetings. Many official members of the forum did not attend the meetings and appeared to undermine the notion that the forum was a partnership. Some suggested that people did not come back to meetings if they had challenged the main focus of the groups work, or felt there were too many differences in the group.

Researchers found twelve people attending the first meeting they observed, ten at the second, then just six at the third. With too few for quorum, that meeting was cancelled. What sapped the motivation from the participants?

The strong sense of ‘we’ based in an oppositional consciousness became more muted and diffuse. Dialogue got bogged down in bureaucratic details and this constrained creativity and dampened enthusiasm generated by direct involvement in community-led research. There was considerable expertise and knowledge within the community, but this was not a priority in comparison to the technical knowledge needed to put together a funding bid. Instead of harnessing local energy for positive social change, discussions became highly task-focused and technical.

What are the conditions needed to make the most of citizen participation?

  • Officials need to develop skills for working with people who start from oppositional positions and to work creatively with conflict rather than try to deny it or close it down.
  • Officials themselves need to be supported and be rewarded for these skills.
  • There needs to be space for multiple forms of expression: both emotional and rational and for diverse ways for people to express themselves. This can be achieved through good facilitation, but can also be ‘squeezed out’ when an external agenda is imposed.
  • The rules of the game between citizens and government officials needs to be negotiated and adhered to in order to develop mutual trust. This is easier to achieve when people have the opportunity to develop collective awareness.
  • Autonomous organisation and ‘free spaces’ not affiliated to state institutions are important places to try out new ways of thinking and action before engaging with officials.

Stop the secrecy: Publish the NHS COVID data deals


To: Matt Hancock, Secretary of State for Health and Social Care

We’re calling on you to immediately release details of the secret NHS data deals struck with private companies, to deliver the NHS COVID-19 datastore.

We, the public, deserve to know exactly how our personal information has been traded in this ‘unprecedented’ deal with US tech giants like Google, and firms linked to Donald Trump (Palantir) and Vote Leave (Faculty AI).

The COVID-19 datastore will hold private, personal information about every single one of us who relies on the NHS. We don’t want our personal data falling into the wrong hands.

And we don’t want private companies – many with poor reputations for protecting privacy – using it for their own commercial purposes, or to undermine the NHS.

The datastore could be an important tool in tackling the pandemic. But for it to be a success, the public has to be able to trust it.

Today, we urgently call on you to publish all the data-sharing agreements, data-impact assessments, and details of how the private companies stand to profit from their involvement.

The NHS is a precious public institution. Any involvement from private companies should be open to public scrutiny and debate. We need more transparency during this pandemic – not less.


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