Ethics and Governance of Clinical Information

Ethics, Confidentialty and Consent Ethical approach Trust Joint Act of Publication Forum for Governance Summary

Clear open approach Open and visible observance of ethical responsibilities Clear understanding of who is responsible for what and why Clarity of legal and ethical responsibilities on behalf of patients, colleagues and employing organisation Atmosphere of “we trust in the NHS” makes it easier to envisage rational systems

Ethical Foundation Ethical, Legal and Policy Requirements researched Discussions between researchers and architects Discussions with clinicians and Caldicott Guardians Iterative architectural design

Trust is key Based upon: –Robust attitudes to ethics –Strict observance of law –Prevention of abuse –Facilitation of unexpected need –Ability to audit adherence to standards –Mutually acceptable governance framework

Rationale Usefulness of EHR based upon trust Patient Clinician Clinician Organisation Organisation Patient NHS

How do we achieve that? Joint Act of Publication This addresses the intention of law, policy and ethics –That information is shared in the NHS with the informed consent of the patient

Joint act of publication Patient and doctor agree to publish information to the integrated (interorganisational) record Usually for a defined purpose With agreed (standard) rules of who can read the information All information from contributing systems is published by this joint act

How do we implement consent? Detail depends on national and local discussion Solution not constrained by the architecture Publication act fulfils the ethical requirement Architecture allows flexibility and evolution

Where does the problem of mutual trust get addressed? Through clinical interaction and communication We need to agree how we share information in a clinical, patient focussed setting Inter-organisational forum This will become inscribed in our systems which we will trust

Governance of Integrated Care Records Inter-organisational records Engagement of Clinical Users Forum for Design and Evolution of systems Trust of Patients and Clinicians nurtured The problem of federable systems Basis for Procurement Relevance to Current Procurement Strategy

Summary Ethics and governance have been key aspects of the project Joint act of publication is an fundamental concept –More work needed to establish how and when to obtain consent Governance forum is the basis of mutual trust Trust safeguarded by a forum of stakeholders at the PSR/PSP level ?

Further information www. Schin.ncl.ac.uk/durhamehr Especially the Ethics, security and governance deliverable