Digitalisation of health and social care — whilst providing solutions to some systemic problems — can increase equity gaps unless Patient and Public Involvement and Engagement (PPIE) in parallel with Culture, Equity, Diversity, and Inclusion (CEDI) is considered at every step. PPIE/CEDI starts at the priority setting stage of health and social care research and development and continues for its lifetime.
Resources to help address inequalities and digital exclusion
British Academy resources
The British Academy has published a policy insight summary for Understanding digital poverty and inequality in the UK from the perspective of SHAPE disciplines (social sciences, humanities, and arts for people and the economy).
NHS England resources
The CORE20PLUS5 approach to reducing healthcare inequalities at national and system level. The CORE20PLUS5 focusses on the most deprived 20% of the national population (Core20) PLUS population groups identified at the local level and the 5 clinical areas requiring accelerated improvement (Maternity, Severe mental Illness, Chronic respiratory disease, early cancer diagnosis, and hypertension case-finding and optimal management and lipid optimal management. CORE20PLUS5 e-learning modules linking to the 5 priority clinical areas are available for free on the NHS Learning Hub (a national digital learning platform).
- A guide to achieve digital inclusion for health and social care for healthcare providers, commissioners, and designers,
- Data, statistics, and publications gathered from and about health and social care systems in England. For assistance, contact the relevant NHS England Service desk
- An annual report on equality, diversity, and health inequalities
UK Government resources
- The ‘Levelling up the United Kingdom’ policy paper, which sets out a moral, social, and economic equity programme.
- A discussion paper on a mental health and wellbeing plan to address mental health disparities, and includes extensive evidence summaries and associated resources (e.g. data, risk factors [e.g. socio-economic disadvantage, age, sex, ethnicity, learning disability and/or neurodivergence, multi- and chronic morbidity, unemployment, debt, lone living, acting as unpaid carer, contact with the criminal justice system, experience of displacement, homelessness, instable housing, violence, abuse, substance abuse, and residential care during childhood), what works for the promotion of good mental health, evidence gaps).
- An independent review of equity in medical devices, that established the extent and impact of potential racial, ethnic and other factors leading to unfair biases in the design and use of medical devices and an associated government response
- An intent to reform the Mental Health Act to better support patients, treat them more humanely, and address disparities
- A comprehensive briefing of UK Government content relating to mental health (e.g. services, guidance and regulations, research and statistics, policy papers and consultations).
Resources from digital health projects
RELAX (REducing Levels of Anxiety) Study
- An article describing the RELAX study which evaluates a digital therapy to help with worry and anxious thoughts during pregnancy. This includes a section on the work with PPIE representatives to ensure that the needs of the ultimate beneficiaries of the research (pregnant women/service users) remain central to the project: RELAX (REducing Levels of AnXiety): a study protocol for a parallel two-arm randomised controlled trial evaluating a web-based early intervention for pregnant women with high levels of repetitive negative thinking to prevent escalating anxiety during pregnancy and after birth
- A short video from a member of the Patient Advisory Group from the RELAX study:
SloMo project - digital intervention for psychosis
- A paper that describes the use of the Double Diamond process to develop one of the NIHR Maudsley BRC supported Medical Devices SloMo which is a psychological intervention for psychosis : How Inclusive, User-Centered Design Research Can Improve Psychological Therapies for Psychosis: Development of SlowMo
- A paper written in partnership with experts by experience that provides an overview of evidence-based co-design, using the example of SloMo, a blended digital therapy for paranoia: Co-designing technology to improve psychological therapy for psychosis: SloMo, a blended digital therapy for fear of harm from others
- The SloMo website has been product of a co-design process: SloMo stories — SloMoTherapy
- A PPI focused paper from SloMo1 trial): The impact of Patient and Public Involvement in the SlowMo study: Reflections on peer innovation – PubMed
- A co-produced thematic analysis: The service user experience of SlowMo therapy: A co‐produced thematic analysis of service users’ subjective experience – Greenwood – 2022 – Psychology and Psychotherapy: Theory, Research and Practice – Wiley Online Library
AVATAR project - a digital therapy for distressing voices
- An article describing a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a digital therapy for distressing voices (AVATAR2): “There’s no us vs. them, it’s just us”: a creative approach to centring lived experience within the AVATAR2 trial.
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- The dissemination work around AVATAR2 has focused on accessible summaries and animations which have been designed in collaboration with PPI Consultants: News | AVATAR2 Therapy Trial | Mental Health Research
- Watch a short video with PPI consultant for AVATAR project
REFUEL-MS - blended self-management treatment for fatigue in MS
- REFUEL MS Patient and Public Involvement Report: Developing, optimising and implementing a blended digital self-management treatment for fatigue in multiple sclerosis.
- Video featuring members of REFUEL-MS Patient Advisory Group discussing their experience of being part of the group.
General PPIE resources
PCORI Engagement Tool
The Patient Centred Research Outcomes Institute (PCORI) is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. To encourage the spread of these practices, they have assembled a repository of engagement-related tools and resources developed and used by PCORI awardees.
Involvement Matrix
The Involvement Matrix can help with involving experts by experience in research projects.The tool was developed by the Utrecht Knowledge Center for Rehabilitation Medicine (KCRU) in collaboration with a group of experts by experience to start this dialogue: It is a tool for project leaders and experts by experience to engage in regular dialogue about their ideas, needs and expectations. The Involvement Matrix allows those involved to make clear agreements about the nature of involvement of experts by experiences in a project.
GRIPP2 Reporting Checklists
GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This paper in the British Medical Journal describes the development of the GRIPP2 reporting checklists, which aim to improve the quality, transparency, and consistency of the international patient and public involvement (PPI) evidence base, to ensure that PPI practice is based on the best evidence.