The overall aim of this theme is to bring patient and carer participation and perspectives to the entire research portfolio of the Biomedical Research Centre (BRC). Our involvement methods include research which is led and managed by patients, employing patients as researchers, and facilitating a BRC Service User Advisory Group that provides advice for researchers working on BRC/U projects. We will develop treatments and interventions that patients value in terms of feasibility, acceptability and potential efficacy.
The theme is a core element of the BRC patient and public involvement strategy and is focused on inventions and interventions valued by patients and carers. Engagement in research is essential to the development of interventions that are feasible and acceptable to patients.
Patient and carer participation is key to successful BRC translational medicine.
Engaging patients and carers in research
Our Consent for Contact (C4C) procedure facilitates research across South London & Maudsley NHS Trust. Patients and carers can sign up to receive alerts about new research opportunities. The Consent for Contact system also allows researchers approved by the Trust to invite patients and carers into research studies. We are also committed to developing a model of participation which enables substantive patient and carer involvement in all phases of research.
Engaging clinical staff in research
We work with a cohort of clinical facilitators across the Trust to support recruitment to BRC studies, and we disseminate our methods nationally so they can be reproduced by other Trusts.
Creating interactive ‘health vaults’ for patients
South London & Maudsley NHS Foundation Trust has developed myhealthlocker™; a web application enabling patients to access some parts of their health record and related information in a secure online space. Patients can access their care plan; keep track of health appointments, record information about how they are feeling, and access resources to help them manage health and wellbeing. They can use this resource to prepare for meetings with clinicians.
Patient and carer reported outcome measures
We are extending our current methods for developing Patient Reported Outcome Measures (PROMS) and Carer Reported Outcome Measures (CROMS) for different disorders and treatments. Studies like these determine which factors patients and carers feel are most important to their health. These studies help to ensure the development of outcome measures which are valued by all stakeholders (patients, carers and staff), helping us to deliver personalised care.