Patient and public involvement and engagement (PPIE) is crucially important for research. It ensures that the value of research – tangible benefits for society such as improved care services – remains the key focus, while researchers benefit from the perspectives of those with genuine lived experiences.
Routine data is one part of the cycle
As one of several data services, DataLoch brings together routine data from day-to-day interactions within health and social care, whilst making sure all data are used securely and appropriately. These data include the types of services used, details of visits to hospitals or GPs, treatments and medicines, as well as outcomes and test results. (See a summary of the data within the DataLoch repository on the About the Data page.)
Putting meaningful data at the centre of research improves decision-making for service delivery, and ultimately means that those on the front line can better meet the challenges of today’s NHS and social care services.
However, although health and social care data offers valuable insights, these can be extended even further. There are many circumstances where the experiences of those who access these services are greatly important and influential. This is where PPIE comes in.
Collaboration and multiple perspectives
Working with members of the public helps researchers to plan, design, manage, shape and carry out activities and research that advances clinical science and medical knowledge. In turn, this produces meaningful outcomes that are in the best interests of individuals and for public health more broadly.
Furthermore, working with service users, carers and community members can generate evidence-based data, provide new perspectives on service requirements, and ensures information and outcomes from research are disseminated to – and shared with – those who could benefit from the work.
Developing your PPIE abilities
PPIE training for all researchers and members of the public is greatly beneficial. For example, within the DataLoch Public Reference Group, we are able to identify opportunities for learning and development through our quarterly group meetings and regular communication.
More formally, dedicated training sessions from providers across the UK can focus on different parts of the PPIE journey. For example, the Edinburgh Clinical Research Facility offers a range of PPIE training courses, such as incorporating public views in funding applications, designing public involvement in clinical trials, creating a PPIE group, and considerations around participant consent and safeguarding.
For those new to PPIE, the Edinburgh Clinical Research Facility also provides a free introductory course that can be completed online at any time.
Additionally, NHS Scotland has collated information on their Patient and Public Involvement Guidance and Training page that offers a foundation for any researcher or member of the public who is new to the idea.
For whatever level of PPIE experience you have, support is available out there.
A note about the DataLoch Public Reference Group
Members of the Public Reference Group are residents of Scotland who have an interest in supporting health and social care innovation. Members are involved in assessing applications to ensure proposed projects are in the public interest, as well as joining meetings where they collaborate with others from different backgrounds and learn more about varied data-driven research topics.
There are ongoing opportunities to join the group, so if you are interested and want to find out more, then submit a message through the Connect with Us page.
