About our Membership


Since use MY data began it has grown organically and has always been open to members from all backgrounds.  We are a movement that concerns itself with inclusion and seeks to emphasise the voice of patients to understand aspirations and concerns around the use of data in delivery, service improvement, and in research. 

As an open movement, we have never asked our members to provide any details about themselves, such as age, ethnicity or gender.  However, to help meet our aim we need to understand the breadth of our members’ experiences and backgrounds.  We want to do this to understand whose voices are missing or under-represented.  We will then be able to begin work to remedy this. 

Working with our Advisory Group, the Secretariat produced a census to collect this information from our members.  The first part of the census was about personal characteristics and the second part about engagement activities.

The census was anonymous and did not gather any information that could identify participants.  

The census ran from mid-July to early August 2020. 

Summary of Key Findings


We are a true mix of patients, relatives and carers

91% classified themselves as patients, 43% classified themselves as carers, and 24% as relatives

Our members represent a range of health conditions but are weighted towards cancer. We need to increase representation of the patient voice in other health conditions

70% of members are/were cancer patients, 25% have arthritis, over 10% report a mental health condition with just over 10% a cardiovascular condition.  Compared with the most common health conditions in the UK, our membership has an over-representation of cancer patients.

 For members who are relatives or carers, there was a very different spread of health conditions for the person being cared for

Cancer was similar at over 70%, but cardiovascular conditions were at 20%, mental health conditions at 25%, 20% for dementia and 20% for arthritis.



Our gender balance is weighted towards female

Our members are 60% female, 38% male and 2% other.  We know that on average, men consult with their GP less than women between the ages of 16 and 60 years so may be less likely to become involved.


We have a mix of ethnicity within our members

The profile of ethnicity amongst our members shows a higher proportion of white when compared with the UK population.  However, the profile of ethnicity in our members is much closer to the profile of ethnicity of the “patient” population.


Our members come from all parts of the UK

88% of our members are from England.  The population of England is 84% of the UK population.


 The age profile of our members compares closely to the age profile of hospital inpatients

As might be expected for a patient movement, we have limited representation in the younger age groups.  No members reported being in the 15-25 age group


The weekly email round-up is being used by over 90% of members


Twitter is used by 40% of our members, but a quarter of those do not follow the use MY data Twitter account

Our members represent use MY data on many different groups across the UK







Contact us

email: contact@usemydata.org.uk

"the only independent patient movement in the UK focused on patient data"
use MY data is registered as a not for profit company limited by guarantee in England and Wales (14425977)

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