Organisations offering opportunities for involvement  

Involving the public in applied informatics at ARC South London  

The ARC's applied informatics theme includes four patient and public advisors, who are highly experienced in understanding patient electronic medical data and digital tools. By collaborating with patients and members of the public, we aim to engage in genuine and informed conversations about people’s expectations regarding the applications of digital technology. Our patient and public advisors are at the heart of our decision-making processes, enlightening and supporting our research activities to inform system planning.

Contact us: cecilia.casetta@kcl.ac.uk

Cicely Saunders Institute - online forum for palliative care

The Cicely Saunders Institute operates an online forum for patient and public involvement (PPI) in palliative care and rehabilitation research. The online forum provides a flexible method of involvement, increasing the number and diversity of people contributing to palliative care and rehabilitation research.

NIHR Maudsley Biomedical Research Centre (BRC)

The NIHR Maudsley Biomedical Research Centre (BRC) is a partnership between South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, Psychology & Neuroscience at King's College London. The BRC is researching novel tests, treatments and technologies to understand and treat mental disorders. 

OneLondon

OneLondon is one of the country’s first Local Health and Care Record Exemplars (LHCRE), designated by NHS England. The OneLondon LHCRE is a partnership of NHS organisations and local government across London, working together with citizens to transform London’s health and care services by joining up information to support fast, effective and safe care.

Electronic health and social care records: involvement opportunities

The Adult Psychiatric Morbidity Survey (APMS): data on adult psychiatric disorders

The Adult Psychiatric Morbidity Survey (APMS) series provides data on the prevalence of both treated and untreated psychiatric disorders in the adult population (aged 16 and over) in England. Findings are available to the public. We welcome feedback or ideas to improve the survey and its outputs.

BioYODIE, SemEHR  and CogStack: text analytics for medical records

This set of search system tools is associated with the Centre for Translational Informatics (CTI), which features a Board that includes, a number of other key stakeholders, including service users, as well as leaders of its partner organisations.

Get involved: email: antony.parker@slam.nhs.uk

Consent for contact (C4C): register of people interested in taking part in mental health research

C4C is a register of people who would be willing for researchers to contact them to ask if they would like to take part in research that contributes to better health for people with mental health-related problems. Anyone interested in involvement can register and be sent research opportunities. South London and Maudsley NHS Foundation Trust (SLaM) also includes further opportunities, such as joining charities that offer searchable databases of current opportunities across the country or online, newsletter subscriptions, and support and participation in specific research projects.

Find out more: www.slam.nhs.uk/about-us

Integrating mental and physical healthcare: research training and services (IMPARTS)

A King’s Health Partners (KHP) initiative designed to bring together mental and physical healthcare in general hospital settings, by asking those who attend KHP trusts to answer a series of questions about their health which is then added to the patient’s electronic health record. Researchers at King’s College London can then use this information for research. The IMPARTS package offers a variety of opportunities to get involved, including free training courses, a seminar series about topics around the relationship between mental and physical health and self-help resources.

Lambeth DataNET: anonymised GP patient records

Lambeth DataNET is an anonymised case register of GP patient records in Lambeth aimed at obtaining anonymous information to plan and improve health services. It has various opportunities for involvement including: assisting in development of the approach, the formation of reports to present for consideration by the Engagement Assurance Committee, membership of the committee, assisting in the promotion and management of Healthwatch (a function that that listens to public and patient experiences of health and care services in order to drive improvements), and attending free events.

National Neonatal Research Database: a continuous care record for neonatal and paediatric care in the UK

The National Neonatal Research Database is associated with BadgerNet, an end-to-end service that supports electronic recording of women and children’s health. Anyone interested in participating can attend events held by the group, or through Imperial College London’s other PPI opportunities.

UK Biobank: health data from 500,000 volunteers

A national and international health resource aimed at improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses. Patient and public involvement opportunities include: registering to be updated on new results and be offered opportunities to help with further research initiatives, as well as specific involvement opportunities for people with particular characteristics and online questionnaires for people who have previously been involved in research. 

Approved digital linkages: involvement opportunities  

Clinical Data Linkage Service (CDLS)

This service ‘links’ information from the Clinical Record Interactive Search (CRIS) with other clinical sources. The Data Linkage Service User and Carer Advisory Group is a regular meeting of people with lived experience of mental illness, all of whom have an interest in mental health research involving data linkage. The group meets on a quarterly basis and researchers are invited to present their project, where they will receive feedback and advice from the group.

CRIS/Child and Family Court Advisory and Support Service (CAFCASS)

CAFCASS represent children in family court cases in England, and its data has been linked with CRIS to enable researchers to understand the mental health needs of mothers involved in care proceedings. Individuals are encouraged to give feedback.

CRIS/Maudsley BioResource

The NIHR Maudsley BioResource for mental health focuses on research into psychiatry and neurology. It stores samples from volunteers with diagnoses such as dementia, schizophrenia, autism, mood and eating disorders, and others, to help advance research into those areas and support the development of more efficient treatments. There are many opportunities for service users and the public to get involved, such as co-leading in research priorities, being part of various groups who meet regularly and give feedback on researcher projects.

DATAMIND: hub for mental health informatics research

DATAMIND enables coordinated research to improve lives and aims to transform mental health research in the UK by providing a central, integrated data infrastructure with accessible mental health data sets. Patients and the public are encouraged to join the DATAMIND Patient and Public Research Advisory Group.

Health Data Research Innovation Gateway

The Health Data Research Innovation Gateway provides a common entry point for discovery and enquiry about access to UK health datasets for research and innovation. Feedback is welcomed on its forum, and it holds specific sessions and workshops. There is also a Gateway Development and Improvement Group that allows for the public and patients to give informal feedback on features.

NIHR Health Informatics Collaborative (HIC)

The NIHR Health Informatics Collaborative (HIC) is a collaboration between 29 NHS trusts aiming to support the flow of patient data and create a framework for data sharing and use across the trusts and partner organisations. Interested public and patients can get involved by becoming a reviewer of research being produced, getting involved in the research creation, or by taking part in the study as a participant. There are also free opportunities to learn about the process of conducting research.

Mobile health resources and apps: involvement opportunities 

Medichec: minimising the risks from anticholinergic drugs

A free web-based app designed to review patient’s medication and minimise the risks from anticholinergic drugs. It is supported by the Centre for Translational Informatics (CTI), which encourages engagement with multiple key stakeholders including service users within their CTI Programme Board. Interested patients and members of the public are encouraged to get in touch.

myHealthE: digital platform supporting children and young people with psychiatric conditions

myHealthE is an NHS digital health monitoring system providing a way for families accessing the Child and Adolescent Mental health Services (CAMHS) to report clinical information and means to support children and young people with psychiatric conditions and caregivers between clinic visits and improve the quality of data available for monitoring treatment effectiveness. Supported by the Centre for Translational Informatics (CTI), the CRI has many opportunities for patient and public involvement, including participating in various groups, courses, volunteering at the service, joining interview panels, or acting as presenters, all to give their voices to the centre and its running.

RADAR-AD: using mobile technology to understand Alzheimer’s Disease

The RADAR-AD project aims to see how mobile technologies can be used to measure disability progression associated with Alzheimer’s disease. Patients and the public are encouraged to join the patient advisory board if they have experience either living with or taking care of someone living with cognitive impairment.

RADAR-CNS: caring for brain disorders with mobile technology

The Remote Assessment of Disease and Relapse – Central Nervous System (RADAR-CNS) is a project examining the potential of smartphone technology and consumer wearable devices such as FitBit to manage and treat brain disorders like multiple sclerosis (MS), epilepsy, and depression. Patient and public members who are interested in getting involved can join the patient advisory board who provide feedback on research, or read participant brochures or a newsletter regarding the projects. Individuals affected by epilepsy, multiple sclerosis or depression can also sign up to be directly told about research opportunities to participant in.

Digital tools and virtual reality: involvement opportunities 

Compass: managing the emotional and physical side of living with a long-term condition

An evidence-based online programme to support people in managing both the emotional and physical side of living with a long-term condition. Compass was co-developed with vital contributions from our patient representative team who have long-term conditions. Individuals who use the programme are also encouraged to provide feedback for the team via the ‘Contact us’ tab.