The Association of Medical Research Charities (AMRC) welcomes the publication of the National Data Guardian Dame Fiona Caldicott’s review of a new consent approach and recommendations on new data security standards for health and social care organisations, and the Care Quality Commission’s (CQC) review of existing levels of data security across the NHS.
Personal health information is a hugely valuable resource for medical research; it is vital in developing understanding of disease and discovering new cures and treatments for patients. Medical research can only realise the potential of personal health information to save and improve lives, if the public is well informed, confident and trust that their information is collected, stored, linked and shared securely and competently in keeping with best practice and current technology standards.
Commenting on the Dame Fiona’s review, Aisling Burnand, Chief Executive of AMRC said:
“Dame Fiona’s and the CQC’s recommendations set out the building blocks for fostering public trust in the handling and care of their information and we welcome these. Recommendations alone cannot build trust, the actions that follow are critical.
“The Secretary of State for Health must now hold a full and comprehensive consultation on the review, and then set out a clear plan to implement a new consent approach and ensure data security standards are met in the NHS and care organisations. Giving people choice about how their information is shared was a manifesto commitment. A timetable of action is needed to deliver on that commitment.
“People need to feel that they can trust the system to handle their information with care and competence, and respect their wishes. If the public do not trust the system, they will be unwilling to share health information for medical research and this will seriously hinder progress on new treatments and cures of diseases such as cancer, dementia, rare conditions and many more.”
To support Dame Fiona’s call for an extensive public dialogue with the public, the Wellcome Trust is hosting an Independent Patient Data Taskforce, with support from the Medical Research Council and UK Clinical Research Collaboration partners. The Independent Taskforce will explore the most effective ways to have discussions about uses of data. Commenting on this, Aisling Burnand said:
"A new Independent Taskforce to explore the most effective ways to have discussions about personal health information is good news. This is a complex area and we need a "Big Conversation" with the public. We look forward to engaging with the Taskforce, and playing our part, as it works to deliver more effective conversations with patients and the public on how sharing health information can transform and save lives.”
For further information please contact Nisha Tailor at email@example.com or 07919 337642.
NOTES TO EDITORS
1. The Association of Medical Research Charities (AMRC) is the national membership organisation for the health and medical research charity world, influencing the policy and research environments by harnessing the collective strengths of our members, to demonstrate the sector’s positive impact on health and wellbeing.
2. AMRC has 133 members which include the largest health and medical charities in the UK: the British Heart Foundation, Cancer Research UK, and the Wellcome Trust. All members, large and small, work to the same high standards ensuring that every pound they spend on research is invested in lifesaving research of the very highest quality.
3. Medical research charities exist because the public choose to donate their money to support research to develop new treatments and cures; 7.6 million people donate in a typical month. In 2014, AMRC members invested over £1.3 billion in health research in the UK.
4. AMRC is a member of the UK Clinical Research Collaboration.