Empower: Data4Health Launches in the House of Commons
Introduced by Geoffrey Clifton-Brown MP the event featured speeches from:
- Jo Churchill MP, two times cancer survivor who believes patients and patient data are the future in healthcare, and plans to champion this issue in Parliament
- Graham Hampson-Silk, co-founder of Empower Data4Health and leukaemia survivor described to the audience Empower's new mission
- Amanda Walburn-Green, who spoke on her daughter Georgia's moving story
- Professor Charlie Craddock, the doctor who saved Graham's life, explained the importance of data in health
- The Life Sciences Minister George Freeman MP, who told the audience that he's looking forward to being hounded by Empower: Data4Health in the campaign for the better use of data in healthcare.
For more coverage of the Data4Health launch, including pictures and comments from the attendees, speakers and supporters, please take a look at our Storify here.
The campaign has only just started, but we need to demonstrate how important our mission is to politicians, the media and the public. If you, or anyone you know, has a personal experience of how data saves lives please get in touch with William Pender (firstname.lastname@example.org).
You can also find below the press release issued after the launch of Empower: Data4Health.
Cancer survivors and rare disease patients 'put pressure' on Life Sciences minster
This week saw the launch of a new health data campaign, Empower: Data4Health, in the House of Commons. The event brought together politicians, including the Life Sciences Minister George Freeman MP, cancer survivor Jo Churchill MP, and host Geoffrey Clinton-Brown MP, with clinicians and patients from across the country.
Empower: Data4Health is calling on the government to rollout electronic health records nationally, and bring together the data for medical research. The Science and Technology Select Committee has recently reported that healthcare data could contribute £14.4bn to the British economy by 2017, whilst centralised data would also help to advance treatments for terminal illnesses.
The Care.Data pathfinders are in progress in areas across the country, the Accelerated Access Review is due to report in the Spring, and there are a number of reports due imminently on how to safeguard patient data. Empower: Data4Health sees this work as vital and wants to ensure the system delivers for patients this time following the withdrawal of the Care.Data provisions in the Health and Social Care Act.
A number of key guests made speeches over the course of the event, highlighting the need for better use of vitally important data across the NHS.
The Life Sciences Minister George Freeman MP said:
“The biggest obstacle we face is data. You will put me under pressure, and I look forward to being hounded by Data4Health.”
Jo Churchill MP, who has twice survived cancer, said:
“I believe in patient data being the power behind the science. Every patient holds an answer. With the support of clinicians and charities, and a strong sense of government purpose, I want to see data used for the benefit of patients.
“I want every life to mean or to have meant something; a patient should be able to choose knowledge as their legacy.”
You can read Jo’s story in full here.
Amanda Walburn-Green, whose daughter Georgia suffers from a rare genetic disorder, told delegates about her family’s battle to get a diagnosis for her daughter, which was only mapped out as part of the genome project. Amanda explained how it was almost impossible to get different elements of Georgia’s care services to coordinate: “Information sharing between hospitals is archaic, paper based and incredibly slow. Only I had the full picture.”
For more information or to arrange interviews, please contact James Hargrave on 0203 267 0074, 07900 904 707, email@example.com or Will Pett on 0203 267 0074, 07540 124 226, firstname.lastname@example.org.
Notes to Editors
- Empower: Data4Health is now taking on a new important challenge in the health debate – using the data at the disposal of the NHS to produce more effective medicines and better outcomes for patients at all levels of the NHS from Primary to Acute care.
- Empower: Access to Medicine was founded in 2012 by Les Halpin who lost his battle with Motor Neurone Disease in 2013.
- Empower’s central aim was to campaign for accelerated and earlier access to medicines for patients with rare and life-threatening diseases.
- Empower has now teamed up with Graham Silk, Co-Founder of Cure Leukaemia, to form Empower: Data4Health. Graham Silk, a Birmingham based businessman, was diagnosed with Leukaemia in 2001, and was saved by an experimental medicine through a clinical trial. Graham is a passionate advocate of the potential of patient data to accelerate medical research, and has joined Empower: Data4Health as its lead spokesman.
- Empower is convening likeminded patients groups, charities, politicians and clinicians to make a positive case for change. If you would like to talk to one of the Data Saves Lives case studies please contact James Hargrave or William Pett on 0203 267 0074.
- Empower: Data4Health had its official launch in Dining Room B of the House of Commons, 13:00-15:00, 23 February 2016. The event featured an introduction from Geoffrey Clifton-Brown MP; the story of Jo Churchill MP and her plans to champion this issue in Parliament; an introduction to the Empower: Data4Health campaign by Graham Silk; the story of Amanda Walburn-Green and how her daughter’s rare genetic disorder was identified; the view of clinicians from Professor Charlie Craddock; and a closing speech from the Life Sciences Minister, George Freeman MP.