use MY data

Using our voice - how our Members are encouraging the use of health data to benefit others

Wednesday, 30 March 2022, 10.00 - 11.30

Our webinar showcased the work of our Members and our Associate Members, to promote the use of patient data to save lives and improve outcomes. We heard direct about their work and about how they incorporate within it, use MY data’s guiding principles on transparency and position statements. We hoped that this showcase would also inspire others to become more actively involved in our work – there is strength in numbers!

The webinar panel

Chair - Richard Ballerand, Advisory Group Member
Pete Wheatstone, Advisory Group Member; Putting use MY data principles into practice - Pete’s experience within Patient-Public Involvement
Fran Husson, Member; Championing patient access to their healthcare data
Emily Lam, Member; Achievements and challenges in Patient-Public Involvement
Rob French, Associate Member; How we're embedding patient and public engagement in our work
Helen Bulbeck, Member; Working with National Cancer Registration and Analysis Service (NCRAS) for patient benefit
Lauren Brown, Arun Sujenthiran, Associate Members & Bob White, Member; Creating the Patient Voices Panel, and how the principles of involvement and transparency have informed our approach
Chris Carrigan, Expert Data Adviser; The impact of use MY data over the last 12 months and our plans

Key points

It was great to hear from our Members and Associate Members on their work and how they have embedded use MY data’s principles within it. Some of the key points which were made are:

The need for patient involvement to bring influence and not be tokenistic
The essential need for transparency about how patient data is used, including highlighting both the benefits and risks of its use
Ensuring that the wealth of existing patient data is actually used and the importance of embedding patients within decisions about this use
Patient voices can be used effectively to drive practical improvements and change, and break down traditional barriers to publication
Opportunites were highlighted to submit a BMJ Opinion article or blog on the patient perspective or to become a BMJ patient reviewer
There are good examples of how to approach involvement; Arnstein's Ladder of Citizen Partnership was flagged as very relevant
There is lots of data out there, but the data needs to be used more widely and effectively
The value of the Patient Data Citation and the need for patients to encourage researchers to use this.

The contents of use MY data Position Statements were highlighted

Our Position Statements were highlighted as useful resurces, as they answered some of the questions raised by the delegates:

The webinar improved the delegates' knowledge and confidence to speak about patient data

At the start of the webinar, we asked delegates to respond to some initial poll questions, asking about their knowledge of, and confidence in, speaking about health data.
We repeated this at the end of the webinar to see if there was any change.
The webinar increased both understanding and confidence; results are shown below:

On a scale of 1-5, where 1 is low, 5 is high

Questions raised during the webinar

A series of questions were raise by delegates during the webinar. These are available in a full list here.

Suggestions from delegates on topics for future webinars

We received suggestions from delegates via the feedback questionnaire. These have all been added to the list of options for future webinars.

Information on Spine (the NHS Digital Spine allows information to be shared securely through national services such as the Electronic Prescription Service, Summary Care Record and the e-Referral Service.)
The benefits and risks of a centralised health and social care data repository to support research.
Role of data as evidence in clinical trials and regulatory decision-making. How patients can be part of this, other than just being 'data subjects' (eeugh). Tranbslating that evidence into wider clinical benefit.
The devolved administrations (Northern Ireland, Scotland, Wales)
The visibility of PPI contributors.
Would be good to return to much more in-depth on some topics e.g. Helen Bulbeck.

The full breakdown of the delegate feedback is available here.

Thank you

use MY data would like to thank all the delegates and speakers for their time and contributions.
Thank you to Jacqui Gath for the video editing support.
Thank you to Trish Gray for creating our webinar graphic.