D4D are pleased to share the implementation stories published with the NIHR for the UK Standards for Public Involvement in Research, featuring two case studies with D4D’s involvement.
The UK Standards for Public Involvement in Research includes six standards that are vital for quality involvement and engagement to take place. These were first released in 2018 and funding was released for applicants to test these standards in practice. A revised set of standards was released in November 2019.
The standards are:
Inclusive opportunities – offer public involvement opportunities that are accessible and that reach people and groups according to research needs
Working together – work together in a way that values all contributions, and that builds and sustain mutually respectful and productive relationships
Support and learning – offer and promote support and learning opportunities that build confidence and skills for public involvement in research
Communications – use plain language for well-timed and relevant communications, as part of involvement plans and activities
Impact – seek improvement by identifying and sharing the difference that public involvement makes to research
Governance – involve the public in research management, regulation, leadership and decision-making
Our involvement was through our links to the Kidney Patient Involvement Network (KPIN), described in Case Study 4, and Case Study 12. You can find them in the publication, here.
The final version of the guidelines that these case studies relate to can be found here.
As an organisation that has always sought a high level of involvement and interaction with patients and carers, and the organisations that represent them, we strongly recommend that technology developers consider the described approaches as a guide to incorporate better involvement into their projects, leading to products and services that are better accepted, address concerns that are of priority to patients, and that are more readily adopted into practice.