Why is patient and public involvement and engagement (PPI/E) important?
Representatives of PPI/E groups can offer an understanding of what it is like to have a specific illness from their unique experiences of treatments and health service delivery. These insightshelp to make decisions and research in the field of mental health more relevant to the needs of patients, carers, and service users.
Patient/public input into how mental health data is collected, shared, and used can enhance procedures and improve research methods and accessibility. It can also improve the quality of the data by bringing new viewpoints and experiences into the process. Providing this input empowers the people involved and provides a route for them to influence change and improvements to research that affects them.
How do we engage and involve patients and the public?
We have set up a Lived Experience Advisory Group (LEAG), which is made up of people from various backgrounds, including service users and carers from throughout the UK, who have an interest in data. Many have links to other similar Research Advisory Groups in their local area, and to local communities interested in mental health problems.
The LEAG play a vital role in DATAMIND and contribute to all aspects of the project. Among their activities are:
Co-production
The LEAG works with the team to create their own outputs, reports, and results. They also support the public’s access to information about DATAMIND, collaborating with other essential operations to create a framework and rules for the general good.
Engagement
The LEAG interact with the rest of DATAMIND to ensure the obtained data and resources offered are responsive to patient/public needs, improving the Hub. They engage with other PPI networks, research groups, and communities across the country to collate and share views.
Participation and Involvement
There is LEAG representation and participation at meetings, events, and workshops. LEAG members can share their experience and bring up issues and awareness as needed. Other Core Activities and projects within DATAMIND regularly seek input from the LEAG.
Leadership and governance
DATAMIND draws on the knowledge of the LEAG to ensure that people with personal experience of mental ill-health have a voice in decisions around the handling of potentially sensitive data. Patient/public members contribute to all of DATAMIND’s leadership and management groups, including its Strategic Advisory Board. The objectives and presumptions of DATAMIND may be contested by the LEAG group. They can also affect the DATAMIND outcomes that are monitored as well as how they are evaluated, which helps to increase the usefulness and relevance of the results for the intended audience.
