Our mission

use MY data is a movement of patients, carers and relatives

use MY data supports and promotes the protection of individual choice, freedom and privacy in the sharing of healthcare data to improve patient treatments and outcomes.

use MY data endeavours to highlight the many benefits that appropriate usage of healthcare data can make, to save lives and improve care for all.

use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.




use MY data's Advisory Group

 

Overview

use MY data is the only independent movement of patients, relatives and carers focussed on the use of patient data. 

We are unique in being entirely led by our Members. Our Members define our priorities, actions and activities, through our Advisory Group.

The Advisory Group’s role is to represent the Members of use MY data and advise the Secretariat on behalf of the Members. This advisory work is undertaken via regular liaison with the Secretariat, communicating through emails and meetings, ensuring that an audit trail of advice sought and received by the Secretariat is maintained.

The Advisory Group and Secretariat have agreed Ways of working, which are documented here

 

Advisory Group and Secretariat meetings

The Advisory Group and Secretariat meet regularly, at present via online monthly meetings. 

Meeting minutes from February 2021 onwards are available here.

 

Advisory Group Members

Richard BallerandRichard Ballerand

Richard Ballerand is an Axolotl partner and digital engagement advisor. Passionate about patient and public involvement in the NHS, he serves on the Council of the London Clinical Senate NHSEI.

With a defence and finance background, during the pandemic he has inputted into Health Data Research UK key missions, and continued his work with NICE Technology Appraisal and NIHR Health Technology Assessment programmes.

This dovetails with roles on NHSx National Data Collaborative, National Data Guardian Oversight Group, THIN (The Health Improvement Network) Advisory Committee, and the Beneficial Changes Network.

An RSM Fellow, he serves on its Medicine & Society Section Council, and is completing a EUPATI (European Patients’ Academy on Therapeutic Innovation) Training Fellowship.

An avid international collaborator (COVID-END Horizon Scanning Global Panel), Richard has been an EMA / IMI European Patient Expert, BMJ Patient Reviewer, CCF Public Reviewer, EIT Expert Evaluator, and NIA Interviewer.

Given his own lived experience, Richard is interested in the challenges facing people with “invisible” disabilities, our diverse communities, the ex-military, as well as the promise and risks of new technologies. @RMBallerand

Other organisations or networks that Richard is part of/connected with and which are relevant to the work of use MY data

 

Dave Chuter (Vice Chair)Dave Chuter

Dave retired from fulltime employment in 2020.  He was a Print Consultant for a large printers in Portsmouth.

He is married with two daughters, two grandsons and a granddaughter.  Dave's hobbies include photography, walking and growing produce on his allotment.

Dave's pathway into research was after his treatment for Oesophageal cancer in August 2006 and was his way of giving back to the hospital and helping new patients with support from patients, so many new patients were being invited to join studies and trials and all had questions he could not answer so he joined his local Cancer Partnership Research Group (SWSH) to find out about these trials and help patients make an informed decision to join or not.

SWSH CPRG was a mix of patients, carers, health professionals and researchers reviewing studies and helping with the lay summary and PIS.  Dave chaired the group from 2014 to 2017.

As there was no local patient support in 2006 Dave started up the Guildford OG cancer support group in December 2006 and he still coordinates and runs this 14 years later, recently going virtual and offering other groups around the UK to join on Zoom

In December 2009 he was elected Patient Governor at the Royal Surrey NHS FT hospital and he stepped down in July 2016 to concentrate more on his NCRI UGI CRG (2014 – 2017) and CRUK CERP (2015 – 2019) roles.  He was asked to stand again as Hospital Rest of England Governor in Oct 2018 and is now Chair of the Patient Experience Committee for the Trust.

Dave joined the OPA (Oesophageal Patients Association) in 2015 as Trustee and then Chaired the Charity from 2017 – 2020, and still volunteers with the OPA as a patient advisor and telephone buddy.

Other organisations or networks that Dave is part of/connected with and which are relevant to the work of use MY data

 

 

 

Jo GumbsJo Gumbs

Jo Gumbs lives in Berkshire and joined the team as an Advisory Group Member in February 2021. 

Jo’s father was diagnosed with ocular melanoma.  As it is a rare cancer, they faced many challenges in terms of treatment and found it a very isolating experience with many unanswered questions.  Sadly, Jo’s father passed away a few years after his diagnosis, so she wanted to ensure there was more support for future patients. 

Jo is now the National Director of  OcuMel UK.  Through her work and learning from the team at Melanoma Patient Network Europe, she became familiar with the difficulties some patients faced and learned how patient groups have worked to influence change.  Jo joined the team at DataCan, the Health Data Research hub for Cancer, and is a member of their Patient and Public Involvement and Engagement Group (PPIE).  Through them, she has found a love of data and can bring rare cancer communities experiences, so their needs are included in future plans.  

She is part of the WECAN Training programme for Evidence-based Advocacy and regularly meets with the Cancer52 and Genetic Alliance teams.  This led to an invitation from the Get Data Out team at Public Health England, to join their Working Group to look at the data needed by her community. 

Jo believes that knowledge is power, and she works with her community to increase knowledge levels.  They have built a Knowledge and Strategy community, where they share and discuss scientific papers and run a weekly ‘book club’ where scientific papers are discussed.  She feels patients should have the information and support they need, at a time they need it.  She and her team launched a service for ocular melanoma patients and family members to receive professional emotional support and have recently recruited a Clinical Nurse Specialist to support patients, especially when navigating treatments and clinical trials. 

Jo is keen for the patient voice to be ‘at the table’ at the beginning of any research.  Having learnt more about patient pathways and how medicines are developed, she now focuses on access to treatment and looking at how she can encourage the right research to help her cancer community.  Although she has experience of a rare cancer, she appreciates that even the more common cancers have subtypes, so she feels it’s vital that work is not duplicated and that solutions help across communities. 

Other organisations or networks that Jo is part of/connected with and which are relevant to the work of use MY data

 

 

 

Sarah MarkhamSarah Markham

Dr Sarah Markham graduated from the University of Cambridge with a master's degree in Mathematics in 1996, and from the University of Durham with a PhD in Hypercomplex Hyperbolic Geometry in 2003.

Sarah is both a long-term patient and a Visiting Researcher in the Department of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology and Neuroscience, King's College London.

Sarah is also active in raising public and patient awareness of the benefits of using patient data in clinical research, the clinical trial process and the nature and experience of patient participation in research. In 2015 she designed and built a beta version online clinical trial recruitment portal for the NIHR Maudsley Biomedical Research Centre. 

Other organisations or networks that Sarah is part of/connected with and which are relevant to the work of use MY data

 

 

John MarshJohn Marsh

John Marsh has a background in consumer data and became interested in health data following diagnosis with bowel cancer in 2008.

His particular interests are breaking down the barriers between researchers and their legitimate use of personal health data to drive forward world health, reduce the cost of healthcare to allow it to be more universally available,  improve operational performance of healthcare provision and benefit UK plc.

Other organisations or networks that John is part of/connected with and which are relevant to the work of use MY data

 

 

 

 

 

 

David SnelsonDavid Snelson

David Snelson started taking an interest in health data when he became aware of data disconnects between NHS organisations dealing with several chronic conditions that he has developed in recent years.

In his working life he spent 37 years in the Royal Navy, being fortunate enough to command two destroyers and an aircraft carrier as well as spending time in the Ministry of Defence. After leaving the Navy he worked in both Executive and Non-executive capacities for the Port of London, The Port of Milford Haven and the Maritime and Coastguard Agency.

David is a Trustee of the Trinity House maritime charity and the Association of Sail Training organisations and is kept busy in his spare time by family, particularly grandchildren!

Other organisations or networks that David is part of/connected with and which are relevant to the work of use MY data

 

 

 

 

 

 

Richard Stephens (Chair)Richard Stephens

Richard has had successful careers in teaching, journalism and local government. He has survived (thus far) two cancers, a heart emergency, and continued co-morbidities and late effects. He has participated in four interventional studies and nine others, and has donated tissue and samples for research.

He has been a patient advocate for two decades, full-time since 2011. He chairs BBMRI-ERIC’s Stakeholder Forum (Europe’s biobanking infrastructure) and NCRI CTRad's Consumer Panel (radiotherapy research), sits on strategic and/or research groups for NIHR, NHS England, PHE, Genomics England, National Data Collaborative, Macmillan and Cancer Research UK, and works with industry and with patient groups in Europe, Canada and the USA.  

He was the patient co-author of the 2015 National Cancer Strategy, and the patient lead for the NCRI-JLA Living With And Beyond Cancer research priority-setting project (2018-21). Beyond cancer Richard helped found the AllTrials campaign as well as useMYdata movement, and he is the founding co-Editor-in-Chief of the Journal of Research Involvement and Engagement.

Richard is a participant in four interventional clinical trials and nine other research studies as a patient.  He is also a participant in over a dozen studies related to views on research, health services and/or PPI. Richard is currently a participant in two Covid-19 quality-of-life/socio-economic impact studies.

He lives in Stevenage, the World's First New Town.

Other organisations or networks that Richard is part of/connected with and which are relevant to the work of use MY data

Advisory Boards/Groups:

Chair, Stakeholder Forum, BBMRI-ERIC (BioBanking and Molecular Research Initiative – European Research Infrastructure Consortium) (until 31.07.21) (*)

 

 

 

 

Pete WheatstonePete Wheatstone

Pete is an experienced Patient and Public Advocate who works with many UK cancer charities, universities and other organisations in the UK and Europe.

He has an extensive background in IT having worked on many major data migration, data quality and business transformation programmes with global financial services companies for over 20 years. He has a special interest in individual choice, trust and transparency in the sharing of healthcare data  (including for artificial intelligence) to improve patient treatments and outcomes.

Pete is the Chair of the Patient & Public Involvement and Engagement Group at DATA-CAN (the HDR UK Hub for Cancer) and a member of the Advisory Group to the IQVIA Cancer Data Network. He also sits on the Patient Data Reference Panel at Cancer Research UK  and works with the Professional Records Standards Body. Within Europe he works with DataSavesLives and Innovation through Health Data. He also provides advice to a growing number of University projects researching the use of Artificial Intelligence (AI) within health care.

Other organisations or networks that Pete is part of/connected with and which are relevant to the work of use MY data

 

The Members' Census 2020 & Expansion of the Advisory Group

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 had never asked our members to provide any details about themselves, such as age, ethnicity or gender.  However, to help meet our aim, we needed to understand the breadth of our Members’ experiences and backgrounds.  We wanted to do this to understand whose voices were missing or under-represented.  We could then 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 was about engagement activities.  The census was anonymous.

The analysis of the census results is available here.

We mapped our results against the UK’s general population and the patient population.  The results show that we have good representation amongst our Members in most areas.  The area where there is under-representation is in disease/health conditions other than cancer.  We need the help of our Members to increase the voices of patients, relatives and carers in this area.  To do this, the Advisory Group and Secretariat have identified a set of actions for our Members and for the Secretariat. 

As part of the work from the results, the current Advisory Group and the Secretariat felt it was timely to expand the Advisory Group, so that it better reflected the diversity of our Members

In January 2021 we advertised via an open call to our Members and highlighted that the Advisory Group required representation from:

All ten places on the new Advisory Group were available, to help achieve the desired representation.

The recruitment process completed in February 2021 and the new Advisory Group came into being on Monday, 15 February 2021.   

We did not receive enough applications to give the Advisory Group the diversity needed to reflect our Members.  We need to address this via further recruitment.  The Secretariat and Advisory Group are working together on this and will provide an update in due course.

 

  

History of the Advisory Group prior to 2021

January 2016 – Following consultation in late 2015, a formal Coordinating Group was created.  Up to this point, use MY data was coordinated by representatives from Cancer Research UK and the National Cancer Intelligence Network. 

Applications to join the Coordinating Group were opened to the use MY data Membership – both Members and Associate Members.  The result was a Coordinating Group of seven Members and seven Associate Members.

Work of this Group was carried out via email.  A key piece of work carried out by the Group was defining use MY data’s mission and aims.  Although these have been tweaked slightly since this point, they remain essentially the same.

2017 – Decision taken that the Coordinating Group should comprise Members only, to ensure use MY data would be truly driven by patients, relatives, carers.  

July 2018 – The Coordinating Group members felt that attendance at the meeting was too low and considered whether membership should be expanded.  Applications were sought from within the membership.  Applications were reviewed at the October 2018 meeting and new Advisory Group Members were chosen by the current Members.

October 2018 - The current purpose of the Coordinating Group was discussed, as members felt that its remit was now as an Advisory Group, not a Coordinating Group.  The name no longer reflected their role and also detracted from the role of the Coordinator.  The decision was taken to change the name to Advisory Group.

 

 

Page last updated: 17 March, 2021