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Involve

Patient and public involvement and engagement

We believe that research and innovation can only solve problems in healthcare when solutions are deeply rooted in people’s needs and values. So we make sure that people are at the core of everything we do – working with, not for, citizens. This requires meaningful involvement with those who we ultimately aim to benefit from our work – the public, patients, health professionals and carers alike, so that we can better understand the issues that affect them, and find the best ways to address them. And by openly engaging with a diverse range of people, we can ensure that no voice is left unheard.

Find out how we’re putting people at the heart of our work through involvement, engagement and co-production.

Explore how we're involving and engaging patients and the public

Helping researchers navigate and embrace public involvement

Public involvement may feel overwhelming to researchers who are trying to navigate a plethora of information online or feeling like they are on their own and starting from scratch.

To help, we developed the Public Involvement Front Door, a digital resource which combines a values-based approach with practical tips and resources to empower researchers of all experience levels to meaningfully involve public members in their work.

We worked closely with a designer, public partners, researchers, and public involvement practitioners to build the site and placed emphasis on making the content as concise and user-friendly as possible.

We hope the site encourages more researchers to involve the public in their work and helps free up capacity for public involvement teams to provide more tailored support where needed.

Check out the Public Involvement Front Door website and read more about how the site came to be in this blog.

Woman facing camera, text reads: What is the networked data lab?

Answering patients and carers' questions about intermediate care

Intermediate care services provide support for a short time to help you recover and increase your independence.

The North West London Networked Data Lab has been working with local patients and carers to understand what matters to them around intermediate care.

We’ve used healthcare data to answer some of their questions, such as who receives intermediate care after a stay in hospital and how this care makes a difference to the number of people who need to go back to hospital.

Watch our video to see what we learned.

We also partnered with Healthwatch Westminster and Healthwatch Kensington & Chelsea to look into the questions which the data couldn’t answer.

They spoke to patients and carers about their intermediate care experiences to explore themes such as the involvement of patients and carers in decision making and the quality and continuity of care received.

Check out the Healthwatch report to hear what patients and carers had to say.

Safely involving women experiencing homelessness in research

We’re partnering with the Marylebone Project (the UK’s oldest and largest women’s homelessness organisation) and Central London Healthcare (a federation of 33 general practices in Westminster) to support the safe and meaningful involvement of women experiencing homelessness in research.

The Marylebone Project told us that current research practices can be harmful for the women who take part. Short-term projects where researchers ask participants to answer personal questions and recount traumatic events without taking the time to build trust and rapport do not offer a safe environment for women to authentically share their experiences.

To address this, we have worked together to develop a project which aims to understand how we can meaningfully involve women experiencing homelessness in the design and delivery of our research to ensure it is relevant and safe for participants, while also protecting the mental wellbeing of the women and researchers involved. To do this, we will draw on the psychologically informed practices used by frontline homeless services to protect the mental wellbeing of their service users and staff.

You can read more about the project in this blog post.

Involving people with lived experience for mental health

We have been collaborating Mental Health Innovations (MHI) to launch the report ‘Help is just a text away: Accessing and scaling mental health support through Shout’s digital service’. Shout is a 24/7 text support line for mental health. We set up a diverse Service User Voice Group of 8 people from across the UK (who had previously used Shout) to shape the report from a service user perspective. They gave recommendations as to what direction the analysis should go in and shared their lived experiences to help shape the narrative of the report. They suggested that the analysts should look at the behaviour of first time texters and how that might differ from people who had used the service before.

The group have also improved the Shout service directly. They have improved the information people receive when they are waiting to be paired with a volunteer and questions that texters are asked in a feedback survey, to help evaluate the service.

We are currently working with MHI on two further reports one about workplace mental health and unemployment and one about 10-13-year-olds mental health and support needs. Both reports are being shaped by separate service user groups with relevant lived experience.

People sit around table - workshop participants discussing barriers to attending hospital appointments

Supporting people to attend hospital appointments

Attending hospital appointments is essential for patients to access the medical care they need to maintain and improve their health. This collaboration between the Helix Centre and Imperial College Healthcare NHS Trust was looking to understand why people miss their appointments and to co-design solutions with community members that help them to attend.

We set up an 8-person Public Steering Group who shaped the interview questions that we asked patients who had missed appointments. They also suggested taking transport forward as a key topic to the co-design workshops. They helped us to ensure the co-design workshop venue, activities and recruitment materials were accessible.

The interventions developed through the co-design workshops are currently being trialed at the Trust. Patients were sent an additional message reminder before their appointment with tailored support relating to transport, reimbursement or information about what to expect before their appointment. The results from this trial are currently being analysed.