The NHS Modernization Bill is going through its parliamentary stages. Section 52 includes the support of a national Single Patient record:
" Single patient record (1) Information The National Health Service Act 2006 is amended as follows. (2) Before section 251 (but after the italic heading “Patient information”) insert— “250E Single patient record (1) (2) (3) The Secretary of State may by regulations make provision for the purpose of establishing a system for making patient information readily available to— (a) (b) patients who have received health care as part of the health service in England or have received social care in England, and people involved in the provision to patients of health care or social care in England.
This exciting national development of a Single patient record readily available to patients who have received health care as part of the health service in England, or have received social care, calls the patients into play as active participants in patient safety. Working with colleagues has helped to develop the following a possible set of guidance with 8 key areas of perspective These are designed to provide independent perspective to practitioners on how digital healthcare and health-information systems can better serve patients and the public, clinicians and healthcare professionals, healthcare organisations, researchers and academic institutions, and healthcare policymakers and professional bodies to ensure that digital-health initiatives remain clinically meaningful, ethically responsible, patient-centred and practically useful.
Key Areas of perspective
1. Patient Access & Personal Health Records
· Provide strategic advice regarding patient access to medical records and personal health information.
· Review approaches to patient-facing electronic health records.
· Advise on how patients can better understand, contribute to and engage with information contained within their records.
· Provide perspective on transparency, patient participation and trust.
· Identify practical barriers that may prevent patients from effectively using digital health information.
2. Clinical Informatics & Digital Health
· Advise on the clinical implications of digital-health initiatives.
· Review proposed approaches to electronic health records and information systems.
· Provide clinical perspective on how technology affects healthcare delivery.
· Advise on the relationship between data, information, clinical reasoning and patient care.
· Contribute to discussions concerning the future development of patient-centred digital healthcare.
3. Medical Ethics & Patient Autonomy
Provide advice concerning ethical principles relevant to healthcare information, including:
· Beneficence
· Non-maleficence
· Patient autonomy
· Justice
· Privacy and confidentiality
· Informed participation
· Responsible information sharing
· Patient consent and transparency
Help consider the patient perspective when developing policies, technologies and information-sharing practices.
4. Patient Safety & Clinical Governance
· Review digital-health initiatives from a patient-safety perspective.
· Identify potential risks associated with inaccurate, incomplete or poorly communicated clinical information.
· Advise on the relationship between record quality and safe clinical decision-making.
· Contribute to discussions concerning clinical governance and information quality.
· Provide an independent patient-centred perspective on proposed safeguards and assurance mechanisms.
5. Healthcare Data & Research
· Provide advice on the responsible use of healthcare data for research and service improvement.
· Contribute to discussions concerning access to primary-care and clinical datasets.
· Consider the balance between research value, patient interests, privacy and appropriate governance.
· Provide perspective on responsible processing and sharing of personal health information.
· Support constructive dialogue between clinicians, patients, researchers and technology organisations.
6. Patient & Public Perspective
· Bring the patient and public perspective into strategic discussions.
· Advise on health literacy and accessibility of digital health information.
· Identify areas where healthcare technology may unintentionally create barriers for patients.
· Encourage meaningful patient participation in the development of healthcare information systems.
· Contribute to approaches designed to strengthen trust between patients, clinicians and healthcare organisations.
7. Policy & International Perspective
· Provide historical and international perspective on the development of electronic health records and patient-access initiatives.
· Contribute to discussions involving national and international healthcare-information policy.
· Participate in selected professional, academic or policy forums where appropriate.
· Provide insight into international approaches to health-data governance and digital healthcare.
· Advise on emerging developments affecting patient-centred health information.
8. Strategic Thought Partnership
· Participate in periodic advisory meetings with senior leadership.
· Review selected strategic documents, proposals and digital-health initiatives.
· Provide independent written or verbal observations when requested.
· Challenge assumptions constructively and identify potential patient or clinical implications.
· Contribute to strategic discussions concerning the long-term direction of patient-centred digital healthcare.
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com