Patient and public involvement and engagement (PPIE) for researchers

The MHRA is considering making it a requirement to involve people with relevant and lived experience in the design, management, conduct and dissemination of clinical studies. Cure Parkinson’s, along with many AMRC charities, already prioritise effective patient and public involvement and engagement (PPIE) as a key ingredient of all the research we support.

There are many ways to involve patients in both clinical and preclinical research; we have collated a number of resources researchers can use to learn more about how to involve the patient voice in every step of the research process.

Guides for researchers

NIHR INVOLVE	Briefing notes for researchers prepared as a part of the UK National Institute for Health Research (NIHR) INVOLVE program which provides an introduction for individuals new to public involvement.
Patient Engagement Roadmap	A process model for patient involvement in medicines research and development provided by the European Patients’ Academy on Therapeutic Innovation (EUPATI).
How-to Guide for Patient Engagement in the Early Discovery and Preclinical Phases	A step-by-step guide by the Patient Focused Medicines Development (PFMD) designed to support research teams, patient communities, and other stakeholders to do more patient engagement in the early research stage.
Resources and Support for Researchers	Toolkit for researchers to use to help them communicate more effectively with study participants. The toolkit, developed by Parkinson’s UK, has been created in collaboration between people with Parkinson’s and researchers.
How-To Guide on Patient Engagement in Clinical Trial Protocol Design	A guide prepared by the Patient Focused Medicines Development (PFMD) that aims to give more clarity, instructions and the key terminology to Patients, Carers, Patient Organisations, Industry (Pharma, Biotech, Devices), Academia, Researchers and Contract Research Organisations (CROs) on how to co-create a clinical trial protocol with patients.
Planning for Participation	This guide, prepared by NHS England, sets out some principles and practical steps researchers can take to ensure they build participation into their programme plans from the outset.
Guidance on engaging the public with your research	Guide for researchers prepared by the UK Research and Innovation (UKRI) on how to use the best practices for engaging the public with research.
Clinical Trials Charter	Cure Parkinson’s helped to develop the Clinical Trials Charter which aims to set a standard of practice for researchers involved in clinical trials for Parkinson’s.
Public Involvement Impact Assessment Framework (PiiAF)	Guidance provided by the PiiAF to help researchers assess the impacts of involving members of the public in their research. The PiiAF Study Group includes academics, public involvement facilitators from NIHR Research Networks and members of the public.

Equity, Diversity and Inclusion

NIHR-INCLUDE	Guidance from the NIHR-INCLUDE project. This summarises what an under-served group is, provides a roadmap suggesting intervention points to improve inclusion and gives examples of under-served groups and barriers to inclusion.
Increasing Participation of Black, Asian, and Minority Ethnic Groups in Health and Social Care Research	Toolkit prepared by the National Institute for Health Research (NIHR) which aims to capture best practice and provide researchers with a framework on how to improve the participation of Black and Asian Minority Ethnic Groups in research.
Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrolment Practices, and Trial Designs	Guidance prepared by the US Food and Drug Administration (FDA) and tailored for industry on how to improve the diversity of participants in the clinical trials.
Achieving Diversity, Inclusion, and Equity in Clinical Research: Toolkit	Developed by Harvard, this toolkit is aimed to help researchers improve diversity, inclusion, and equity in clinical research.

Research resources: insights and priorities from people with Parkinson’s

Rallying to the Challenge conference led by and designed for people with Parkinson’s

This conference runs in parallel with the scientific meeting Grand Challenges in Parkinson’s. Before each Rallying meeting, a survey is co-created with people with Parkinson’s around the theme of the parallel meetings. The results are presented during Rallying and additional focus groups discuss aspects of each survey to add further insights. The findings are then shared with Grand Challenges before being published. Below are published papers from this process.