Representing diversity
The huge diversity of people and communities can be challenging for teams. It can be difficult to know where to start or who is best to work with. No one size fits all, and different teams will need to take different approaches.
We want to build long-lasting relationships with people and communities, not transactional ones. Planning and budgeting for engaging with people and communities will help ensure you think about these long-term relationships.
When thinking about diversity, there are several important themes to consider.
Representation
Are there particular groups you need to target as part of your involvement approach? Have you ensured that you are including groups of users who might be regarded as ‘seldom heard’? Depending on what you are trying to find out, you will need to target specific people to take part. Completing an equality and health inequalities assessment (EHIA) will help with this process. This EHIA is only accessible to people with an NHS England login, though your local organisation may have a similar assessment tool.
You may also want to review the National Institute of Health Research equality impact assessment toolkit. The toolkit was developed to ensure that research does not disadvantage anyone, particularly those who are underserved or have a protected characteristic. An equality impact assessment is an approach designed to improve equality analysis, practice and outcomes.
Example: learning from breast screening patients
In the breast screening discovery, the team conducted interviews to understand people’s needs and their motivations and barriers to attending their screening appointment. Participants were selected who had recently received an invitation and either attended, were planning to attend or did not attend. Within this group, users included people who had follow-up treatment and positive/negative experiences such as waiting over 2 weeks for results. The team worked to ensure a diversity of users, including working with trans men and patients with accessibility needs.
It’s also important to include variance in age, region, ethnicity as well as users with impairments (visual, motor, cognitive or hearing) and low digital confidence.
Experience of health services
For wider-scale transformation work, such as interoperability and service transformation, it might be helpful to work with people, patients and carers who are interacting with multiple health and care services frequently and over time (for example those with multiple long-term conditions).
Similarly, it might be helpful to consider people who aren’t accessing services but should be. When designing digital services, it is just as important to consider those who do not interact with digital services, as well as those who do. What are the barriers to accessing digital services? What are their ideas and solutions for receiving this?
Example: experiences of using NHS 111
The Digital Urgent and Emergency Care team recruited patient, public voice (PPV) partners by holding an event for people to come and share their experiences of using the NHS 111 service, or their reasons for not using it.
Members then worked together to help co-produce an e-learning package for staff working in the NHS 111 service to help staff better manage calls from patients requiring mental health care. ‘Focus on Mental Health’ aims to inform and engage NHS 111 call handlers to enhance their existing mental health training and to support them in their personal development.
Expert PPV partners
In some circumstances it will be helpful to recruit people to:
- be members of your decision-making or advisory groups
- play an ‘expert by experience’ role to challenge and inform rather than represent a specific view
- champion and question whether people have been meaningfully involved in decision making and service design
- PPV partners would usually be involved in influencing strategic direction, rather than speaking from their own experience.
Patient and public involvement at NHSX
NHSX has recruited 2 strategic PPV partners to challenge and hold it to account on how it ensures people’s voices are heard across its work.
Next chapter: Representation in decision making and governance
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