How can staff and service users work together to improve health services?
Bringing service users and health staff together to shape and improve services is no easy task, but it is a valuable process. If you commission health services or work directly with service users, you understand very well the challenges of working with constrained resources in a changing NHS landscape. Effective engagement between staff and service users can lead to more relevant services, greater uptake of services and ultimately better value for money. The process can turn service users from being passive to active in their healthcare choices and encourage them to better maintain their own health.
This guide draws on lessons and practices from the Beyond Consultation project. They are included to illustrate how an effective engagement process is put into practice. It details a series of steps designed to encourage genuine participation and engagement between staff and service users. For each step there are questions to guide decisions, useful practical methods and tools, expected outcomes and potential challenges.
Resources
Prioritising and communicating issues
Creative methods help people increase their confidence enabling them to reflect on their experiences and to start expressing issues that are important to them. Methods such as drawing or role-play can unlock experiences and perceptions in a way that goes beyond received wisdom or the usual way of talking about things.
Producing a range of communication outputs – posters, photos or short films – can then help to capture experiences and concerns in a way that conveys them to others.
Creative methods to help articulate priority issues
Service users were asked to draw their life experience as a road. Using symbols of junctions, signs and other road metaphors, they highlighted key moments that had an impact on their sexual and reproductive health. This allowed people to get to know each other, build trust and situate their sexual and reproductive health needs in the broader context of their lives and relationships.
Click for a full example of a 'road of life'
As well as using drawing to explore life experiences, it can be used to consider more specifically people’s experiences of services. In work with staff we asked them to draw two pictures. One representing a successful time or encounter in their work and one to represent an unsuccessful time or encounter. They were then invited to talk about the images and the experiences they evoked.
The picture below was drawn by a health advisor who advises service users undergoing testing for HIV. The picture represents a successful encounter.
Click for the full-sized health advisor drawing
It shows a couple in a consulting room. The woman is being diagnosed as HIV+.
Health advisor: “She was fearful of disclosure to her partner and we slowly worked up to it, but to her surprise, he was really good. She feared he wouldn’t cope and how he would be, but he was good and tested negative. This was really challenging for her, but it was great to see it turn out well.”
Facilitator: “What is he holding?”
Health advisor: “A calendar, her first reaction was not to tell him, and not attend the clinic and give up, but in the end he was so keen to work out the appointments and dates and be involved.”
Building consensus around priorities for change
After participants have had an opportunity to explore express and share their experiences in the group they can move to agreeing a shared set of priorities as a focus for taking forward the project. Beyond Consulation used a consensus building method based on ICA/ToP™ methods.
Participants agree on a question to help focus their choices.
Individually participants wrote down answers to the question. Then in small groups they compared their answers and agreed some answers to be written on cards and go on the wall. All the answer cards are then reviewed and grouped until there are set of clear themes. These themes can then further be prioritised and participants can then consider how to address them.
Using problem trees to explore priority issues
Once an issue has been identified as priority, it is important that all participants have a shared understanding of what the issue entails. Using a problem tree to consider the causes and consequences of an issue can help to bring together everyone’s understanding and to get a clearer picture about how it can be addressed and communicated. During the Beyond Consultation project, the group of young African men who have sex with men drew a problem tree to consider the causes and consequences of the stigma and discrimination that they experience. Problem trees can be further developed with more layers of causes and consequences, linking from roots and branches.
A problem tree - click for high resolution version
Communicating priorities
After agreeing priority issues the next step was to work to find ways to communicate those issues to staff and other stakeholders and to do this in ways which are engaging and which capture the personal stories behind the priorities.
Beyond Consultation used participatory photography to illustrate the personal experiences underpinning the priorities. Participants received digital cameras and some basic photography training. They discussed the prioritised themes and planned and took photographs for the project over several weeks.
Project facilitators and participants then reviewed and discussed the photographs and developed captions for them. Some photographs were used to produce posters with quotes or captions from the participants about themes such as medication or a clinic visit. Some were used to make digital stories.
The women’s group designed posters by choosing photographs that reflected key themes and then collectively agreed statements and quotes that expressed their different views in regard to those themes.
One participant produced a photo story with images and longer captions about her visit to the clinic
The group also worked on storyboarding or scripting stories about particular themes and how these play out in their lived experience. This resulted in audio recordings and interviews as well as in digital stories which combined the photographs and an audio recording of a script.
Cross group dialogue
After working separately (but in parallel), Beyond Consultation service users and staff met together to share and explore issues, build mutual understanding and identify possible practical changes. We held an event with a larger group of health stakeholders where we shared the materials produced by the participants.
A system mapping approach was used to build on the experiences of all the participants and enable broader perspectives and reflection. This was facilitated by Professor Danny Burns from the Institute of Development Studies, University of Sussex. The approach which drew on Whole Systems Action Research was to support participants in thinking about the issues they face as being situated within a complex system rather than looking at issues in isolation. Often we look at the problem without looking at the system but to address problems we need to look at the whole system within which they are situated.
This helped to see how the issues were relevant to the people present and to highlight opportunities for practical change emerging from people’s daily activity, and identify the constraints that affect health and health services.
Working with staff, service users and other stakeholders, the system mapping process began with concrete experiences of sexual and reproductive health and HIV services. Exercises helped participants view problems as being part of a system.
The multi-stakeholder dialogue day was intended as a step towards working together to improve HIV and sexual health services and related support.
The participants collectively produced a map of the systemic issues, stakeholders, facts and assumptions which can be present as clinicians deal with social issues that impact on African women living with HIV. A number of lines of enquiry developed through the systemic mapping which served as a starting point for the next phase of the project.
Dialogue Day system map
Peer enquiry
Up to this point, the Beyond Consultation process built a picture of priority issues for service users and staff. Further detailed information and experiences were needed to identify concrete opportunities for change.
Peer enquiry is a way to gather a bigger pool of experiences and stories. It helps to understand the range of different life circumstances that affect people’s health and access to health services. It is also an opportunity to test assumptions and gather further detail. Reaching out to a wider network through service users and staff can extend the project to people who are otherwise unwilling or unable to engage in the process.
Participants needed support and training to conduct peer research. Different communications methods and communication channels (texting, interviewing, online surveys) can help to reach different people.
Beyond Consultation used online surveys to reach more NHS staff and the women’s group interviewed other African’s living with HIV.
Peer enquiry on confidentiality
The Beyond Consultation project supported African women living with HIV to interview their peers. Together, service users and staff developed a set of questions about how personal information is – and should be – kept confidential. The project developed guidelines to help them introduce, document and conduct the interviews. The service users practised interview techniques and audio recording. Collectively they agreed how to identify interviewees to extend understanding of the issue. Then each participant interviewed at least two other people.