Use MY Data

Overview

Area(s) of interest:

All Disease Types

Our Members are patients, relatives and carers, focussed on the use of patient data to save lives and improve outcomes. Our membership maps to the inpatient population of the UK, in terms of health condition, gender, age-profile, location (across the four nations) and ethnicity. We cover all disease/health conditions.

Additional information

Location: UK

Mode of working: Hybrid

Face-to-face preferred| Hybrid

Although some people can take part in research online/remotely, some of our community experience digital exclusion. Face to face interactions tend to work best and we have found that people are often more relaxed in familiar settings so if researchers are able to visit us in person, at one of our Centres, this can be helpful.

Research experience: Yes

Notes:

As a group we convene workshops, that bring together researchers and our Members, to focus on a particular element/issue, for which a researcher or research organisation is seeking. This is often at the early stage of a grant proposal.
We connect individual Member with researchers, to aid their work – via joining panels/steering groups, reviewing summaries etc.

Type of involvement:

Ad-hoc Support| Co-Production| Panels| Reviewing Summaries| Steering Groups

Availability:

Expenses:

It is good to know about honoraria options – whether it is offered, or otherwise – at the start of any engagement/involvement.

Our comments to researchers:

Our uniqueness is our Members – patients, relative & carers. We are an entirely patient-led organisation, and we bring a range of views from Members, some experienced in data, some less so, but all bound by a common cause, for our patient data to be used to help others and to help us.

Our Members are a unique asset, keen to influence the use of patient data across the UK via connecting widely, with researchers, public and commercial organisations and governments.