Rowena Rodrigues, Trilateral Research Ltd, attended the Westminster Health Forum Keynote Seminar on Electronic patient records and IT in the NHS, held at Glaziers Hall, London on 9 Feburary 2016. The first session of the event was chaired by Daniel Zeichner MP, Vice-Chair, All-Parliamentary Group for Life Sciences. Beverley Bryant, Director of Digital Technology, NHS England spoke about progress towards a paperless NHS and implementing the Personalised Health and Care 2020 Framework. Andy Williams, Chief Executive, Health and Social Care Information Centre, spoke about the next five years for data and technology in healthcare. Dr Peter Lewis, Executive Medical Director and Caldicott Guardian, Birmingham and Solihull Mental Health NHS Foundation Trust and Dr Adrian Davis, Managing Director, EMEA ISC2 discussed the priorities for information governance and safeguarding patients in an integrated system of care.
The second part of the event was chaired by Rt Hon the Lord Warner, former Parliamentary Under‐Secretary and Minister of State, Department of Health. Andrew Fenton, Programme Director, NHS South, Central and West Commissioning Support Unit; Ash Soni, President, Royal Pharmaceutical Society; Clare Marx, President, Royal College of Surgeons and Chair, Strategic Clinical Advisory Group, National Information Board; and Gerard Crofton‐Martin, Director of Quality and Evidence, Healthwatch England shared insights into the developing role of data‐sharing in whole‐person care. Mike Merritt‐Holmes, Chief Executive Officer and Co‐Founder, Big Data Partnership discussed how big data could be used to improve insight and target healthcare service delivery. Dr Charlie Davie, Managing Director, UCLPartners Academic Health Science Network spoke about priorities for the use of patient data in medical research: access, quality and confidentiality.
Key ethical issues of healthcare data that were identified and discussed include: consent, security, privacy, data protection, integrity of records/data, data accuracy, availability, ownership of IT and data, accountability, user engagement and trust, transparency. Some other key issues that came to the fore:
- Need to effectively manage people’s fears about the risks of innovation
- Taking into account the special needs of the vulnerable e.g. the elderly.
- Is privacy being used excessively to restrict information sharing?
- Challenges with gaining consent; consent elements could be simplified to cut out inefficiencies in the process. Consent contexts e.g. medical care or research should be clear.
- Users need to be confident about a new system: robust and ongoing training is useful.
- Interoperability is key to success.
The Westminster Health Forum is largely a policy makers’ engagement forum. This event was attended by healthcare industry representatives, academia, government agencies such as the Cabinet Office, department of health, media, ICO, NHS England, patients4data, GPS, first responders, MHRA, and NHS trusts.
Rowena Rodrigues provided a short contribution to the briefing document of the event based on research in WP8 of PULSE.