Neurotech

Epilepsy Action: Your Guide to Commissioning in Epilepsy

Guide for ensuring med tech for epilepsy aligns with patient challenges and needs

iBCI-CC (Implantable BCI Collaborative Community)

Convenes stakeholders into working groups to solve challenges of BCI development and implementation

Dana Frontiers (Dana Foundation)

Grants for neuroscience researchers to engage with patient groups and other stakeholders

The Brain Tumour Charity

Information on how to engage with their “Involvement Network” of brain tumour patients and carers

International Neuromodulation Society

Information for patients on conditions and therapies, written by leading researchers in the therapy

McPin Foundation

Examples of opportunities for mental health patients to contribute their lived experiences to research

General

IAPO: Working with Partners and Stakeholders Toolkit (International Alliance of Patient Organisations)

EUPATI: Toolbox (European Patients’ Academy on Therapeutic Innovation)

Toolkits and guidelines to support collaboration between patient organisations and pharmaceutical industry

Versus Arthritis: Involving People with Arthritis, a Researcher’s Guide

Arthritis Research UK: PPI, A Researcher’s Guide

Guides for basic science and clinical researchers to involve arthritis patients

ABPI + National Voices: Working together, delivering for patients (Association of the British Pharmaceutical Industry collaboration with National Voices)

Guide for helping charities and pharmaceutical companies work together

PPMD Strategy (Parent Project Muscular Dystrophy)

Collection of notes and publications from PPMD on their PPI strategy and accomplishments

EMA: Engagement Framework (European Medicines Agency)

Methods for EMA’s engagement with patients, including patient experience data collection and patient communication methods

EPF: The Added Value of Patient Organizations (European Patients Forum)

Overview of European patient organisations, including their roles in involving patients during research and development

ASIF: Working with the Pharmaceutical Industry (Axial Spondyloarthritis International Federation)

Advice for axial spondyloarthritis patient groups to partner with pharmaceutical companies

MTG (Medical Technology Group)

Provides forums for patient representatives to engage with med tech manufacturers

Clinical Research Networks

UK NIHR (National Institute for Health and Care Research)

Resources for clinical and non-clinical researchers in the UK to connect with regionally-specific and specialty-specific PPI groups

CRN (Clinical Research Network)

Provide help with patient recruitment and design of patient-centred studies in broad range of clinical trials, grouped by region and specialty

BRCs (Biomedical Research Centres)

Provide help with involving patients in early-stage translational research, including via specialty-specific TRCs (Translational Research Collaborations)

CRFs (Clinical Research Facilities)

Provide facilities in NHS hospitals across England to help with practical aspects of clinical trial delivery

RDN (Research Delivery Network)

More centralised successor of the NIHR CRN, starting in late 2024

Other Resources

COMET Initiative PPI Toolkit (University of Liverpool)

Guide for researchers to plan PPI for their study

PCORnet (National Patient-Centered Clinical Research Network)

Examples of patient engagement in studies on obesity, aspirin use, and more; patient co-investigators

Voice

Platform to arrange public working groups with specific types of people for free

BMC CRN (Boston Medical Center Clinical Research Network)

Provide services to support community engagement and rapid study activation

DCRI (Duke Clinical Research Institute)

Examples of initiatives where patients serve on steering committees and provide input on trial design and patient materials

Papers

Reengineering neurotechnology: placing patients first (TUM)

Patient engagement in research (Patient Engagement in Research Partners)

Digital technology and PPI (UCL)