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NIGB

NIGB. NIGB IG Collaborative Workshops The Reality of Delivering the Information Revolution. Break out Sessions Information Strategy & Governance. NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE. #NIGB #HSCIG. Leeds – Birmingham - London . Consent for Consent

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  1. NIGB NIGB IG Collaborative Workshops The Reality of Delivering the Information Revolution Break out Sessions Information Strategy & Governance NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE #NIGB #HSCIG Leeds – Birmingham - London

  2. Consent for Consent An Information Governance Framework to Enable Research and Improve Patient Care Dr Murat Soncul Head of Information Governance NIGB Collaborative Workshops27-29 June 2012

  3. Objectives • Introduction • Transition and empowerment • Concept and objectives • Stakeholder involvement • Key aspects • Challenges and lessons learnt • Next steps • Conclusions

  4. Introduction- History Bethlem Royal Hospital founded in 1247. Oldest psychiatric institution in the world. Maudsley Hospital founded in 1930 with £30K donation from Dr Henry Maudsley. South London and Maudsley NHS Foundation Trust was formed in 1999. William Hogarth - 1735 Henry Maudsley BRH in 1896 – Now the Imperial War Museum

  5. Introduction- Today Provider of mental health and substance misuse services from 4 hospitals and 100 community sites. Largest provider of specialist mental health services in Europe. Jointly operates the NIHR Biomedical Research Centrefor Mental Health with the Institute of Psychiatry, KCL. Member of Kings Health Partners Academic Health Sciences Centre.

  6. Transition Implemented a single electronic health records system across all clinical services in 2006. ePJS • Tailored to the needs of services • 200,000 health records • Electronic records directly linked to legacy records • Reporting tools for better data quality, improved outcomes and regulatory compliance CRIS • Informatics to make best use of clinical information • Enabling research • Effective anonymisation/pseudonymisation

  7. Transition

  8. Empowerment Secure Network Data Interchange with GP systems PROMs My Care Plan My Monitor Resources Diary Trust Electronic Patient Record ePJS Personal Health Record HealthVault Connection Centre Pseudonymisation Research Information System CRIS

  9. Design and Governance Trust Board Strategic Steering Groups Programme Board Design Authority Caldicott CommitteeCRIS Oversight Committee ICT Security Committee Stakeholder reference groups Implementation groups Monitoring Committees

  10. C4C – Concept and Objectives No decisions about me without me! To develop the pseudonymised research database (CRIS) that extracts data from electronic health records (ePJS) for non-contact research to facilitate contact research. To design a process to seek explicit patient consent to be contacted to discuss potential participation in research study/clinical trial. To maintain the principle of initial communication within the clinical care team. To enable de-anonymisation in a safe haven for patients who have consented.

  11. Key aspects Consent for Consent is an integral part of the electronic health records system (ePJS). Initial contact for C4C is made by the clinician who has a therapeutic relationship with the patient. Patients’ specific wishes are recorded. C4C decision revisited by the clinician during the course of care, especially when there are substantial changes to diagnosis and at discharge.

  12. Key aspects C4C data is linked to the pseudonymised research database for translation in the safe haven. Authorised researchers with ethics approved projects utilise the pseudonymised research database (CRIS) to identify patients that match their research criteria. Approved researchers in SLaM only gain access to contact details of patients who have given consent. Patients’ wishes are monitored. Projects that each patient is associated with are recorded.

  13. Key learning points and challenges • Information governance and ethics led • Regulatory approval • Clinical service ownership • Patient awareness • Guidance and training for clinical and research staff • Capacity to consent • Proxy arrangements • Monitoring to limit involvement and avoid overload

  14. Next steps Review of initial results / feedback Monitoring of implementation Caldicott review Well-informed patients Appropriately trained staff

  15. Conclusions • Development of an EPR that meets the requirements of the organisation • Effective anonymisation / pseudonymisation that enables research • Consent and security models for compliance • Active stakeholder involvement (patients, carers, clinicians, researchers and service leads) • Senior management ownership • Information governance is an ‘enabler’ when appropriately and timely involved

  16. Thank you! Dr Murat Soncul Head of Information Governance Murat.Soncul@slam.nhs.uk NIGB Collaborative Workshops27-29 June 2012

  17. NIGB NIGB IG Collaborative Workshops The Reality of Delivering the Information Revolution Break out Sessions Information Strategy & Governance NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE #NIGB #HSCIG Leeds – Birmingham - London

  18. Consent and the Information Revolution Ibrahim Hasan Act Now Training

  19. WHICH IS THE ODD ONE OUT?

  20. The Law Data Protection Human Rights Breach of Confidence Freedom of Information

  21. What is Consent? • “any freely given specific and informed indication of his wishes by which the data subject signifies his agreement to personal data relating to him being processed”

  22. Importance of Consent • Clause 26 Standard Commissioning Contract • The Data Protection Act 1998 • ICO Data Sharing Code

  23. Importance of Consent • Clause 26 Standard Commissioning Contract • The Data Protection Act 1998 • ICO Data Sharing Code

  24. First DP Principle • Personal data shall be processed • fairly and lawfully • Schedule 2 • Schedule 3

  25. Schedule 2 Conditions Consent Contractual purposes Legal obligation Protect vital interests Public functions – justice, public duty etc Legitimate interests

  26. Schedule 3 Conditions Explicit consent Employment rights/obligations Vital interests Legitimate club use In public domain Public functions Legal proceedings/advice Medical purposes Equality Monitoring

  27. Importance of Consent • Clause 26 Standard Commissioning Contract • The Data Protection Act 1998 • ICO Data Sharing Code

  28. What is Data Sharing? • “…the disclosure of data from one or more organisations to a third party organisation or organisations, or the sharing of data between different parts of an organisation.”

  29. What is Consent? • “any freely given specific and informed indication of his wishes by which the data subject signifies his agreement to personal data relating to him being processed”

  30. Explicit Consent • confidential or particularly sensitive information is going to be shared without a clear legal basis • the individual would be likely to object should the data be shared without his or her consent • the sharing is likely to have a significant impact on an individual/group

  31. Fair Processing Code • Who you are • Why you are going to share personal data • Who you are going to share it with – actual named organisations or types of orgaisnations

  32. Code – Section 6 • Privacy Notices • Single or multiple? • When and who

  33. PAPER FORMS I give my consent for...

  34. DATA PROTECTION NOTICE • We may, from time to time, pass on your name and address to companies whose products we think will interest you. Please tick the box if you do not wish us to do so.

  35. Telephone “Hello! You’re through to Rupert. Please note that calls may be recorded for…”

  36. 38 Summary • Practitioners must: • Use clear accessible language • Explain there are times when confidentiality can not be maintained • Be aware of relevant legislation • Follow local policies and protocols • Consent: • Must be informed • Should normally be explicit but can be implied (written is preferable but can be verbal) • Must be willing and not inferred from a non response • Must be sought again if things change significantly • Can be withdrawn

  37. Clause 60 – Standard Commissioning Contract

  38. 7th DP Principle • Appropriate technical and organisational measures shall be taken against unauthorised or unlawful processing of personal data and against accidental loss or destruction of, or damage to, personal data.

  39. www.ActNow.org.uk

  40. Contracts With Data Processors • Processor to act only on Controller’s instructions • Mirror Controller’s obligations • Security • Employees

  41. Biggest ICO Fine

  42. The Future of Consent? • NHS Re Organisation • New EU Data Protection Regulation

  43. info@actnow.org.uk 01924 451054 @ActNowTraining Getting in Touch

  44. NIGB NIGB IG Collaborative Workshops The Reality of Delivering the Information Revolution Break out Sessions Information Strategy & Governance NATIONAL INFORMATION GOVERNANCE BOARD FOR HEALTH AND SOCIAL CARE #NIGB #HSCIG Leeds – Birmingham - London

  45. Cross-sector information sharing “STRIKING THE BALANCE” Practical Guidance On the application of Caldicott Guardian Principles to Domestic Violence and MARACs (Multi Agency Risk Assessment Conferences) Christopher Fincken Chairman UK Council of Caldicott Guardians

  46. “STRIKING THE BALANCE” "Any fool can make things complicated, but it requires a genius to make things simple." E.F. Schumacher

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