Opportunities and Challenges of Using Electronic Health Records to Enhance Patient Care Dr Amir Hannan Full-time General Practitioner Primary Care IT lead, NHS North-West Information Management & Technology lead, NHS Tameside & Glossop Haughton Thornley Medical Centres, Hyde, Cheshire, England Member of the National Clinical Reference Panel for Summary Care Record, NHS Connecting for Health 8 th July 2010 Cartoon taken from

Summary The case for change Managing aspects of consent and confidentiality Governing internet access to patient records

The rising cost of care Ageing Population 2001 – over 60s > than under 18s 2050 – 4 times as many needing care At 4 times the current cost More expensive treatments /technologies Funding gap – £15-20 billion over next 3 years

“The least used resources the NHS has are patients and information” Dr Richard Fitton GP, ex-Caldicott Guardian, NHS Tameside & Glossop

Tension between Information Governance and Clinical Governance Confidentiality Information security NHS Records Management Standards and Guidance Information Governance Clinical Effectiveness Risk management effectiveness Patient experience Communication effectiveness Resource effectiveness Strategic effectiveness Learning effectiveness Clinical Governance

Caldicott Guardian – the Guardian Angel above us all! Information Governance Clinical Governance A Caldicott Guardian is a senior person responsible for protecting the confidentiality of patient and service-user information and enabling appropriate information-sharing. The Guardian plays a key role in ensuring that the NHS, Councils with Social Services responsibilities and partner organisations satisfy the highest practicable standards for handling patient identifiable information.

Safety vs Confidentiality The Declaration of Human Rights balances the right for life and security with the right for a private life You cannot have a private life if you have died of a medical accident (10,000 each year in the UK) Article 3. Everyone has the right to life, liberty and security of person. Article 12. No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks. The DPA review demonstrates PROPORTIONALITY. What is most important patient safety or confidentiality. It is a balance that has to be thought about planned and audited. (Thanks to Dr Richard Fitton, ex-Caldicott Guardian, NHS Tameside & Glossop)

The Partnership of Trust

The Paradigm Shift in Healthcare IT based health care system Internet Increase in health literacy Patient access to Electronic Health Record Patient choice Choice leads to better outcomes

Data Protection Act SCHEDULE 1 The data protection principles Part I The principles 1 Personal data shall be processed fairly and lawfully and, in particular, shall not be processed unless— to be fair and lawful patients need to be able to know what is being processed  at least one of the conditions in Schedule 2 is met, and  in the case of sensitive personal data, at least one of the conditions in Schedule 3 is also met. 2 Personal data shall be obtained only for one or more specified and lawful purposes, and shall not be further processed in any manner incompatible with that purpose or those purposes. When patients can see audit trails they can help to audit what the data is processed for and when it is being processed inappropriately. 3 Personal data shall be adequate, relevant and not excessive in relation to the purpose or purposes for which they are processed. When patients can see and contribute to the record they can help decide when data is excessive in relation to the purpose for which it is being processed. 4 Personal data shall be accurate and, where necessary, kept up to date. Patients can help keep the data accurate and up to date – reviewing it and pointing out errors and omissions. 5 Personal data processed for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes. Patients who access their records can help to decide what should be “deleted” when it is no longer necessary. 6 Personal data shall be processed in accordance with the rights of data subjects under this Act. Patients have rights to see their records (Section 7),to prevent processing likely to cause damage or distress (Section 10), in relation to automated decision-taking (Section 12) and of rectification, blocking, erasure and destruction (Section 14) Seeing their records can help them have express these rights. 7 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. Patients checking their record contents and audit trails is one appropriate measure. 8 Personal data shall not be transferred to a country or territory outside the European Economic Area unless that country or territory ensures an adequate level of protection for the rights and freedoms of data subjects in relation to the processing of personal data. 36 Domestic purposesPersonal data processed by an individual only for the purposes of that individual’s personal, family or household affairs (including recreational purposes) are exempt from the data protection principles and the provisions of Parts II and III. Patients who access their own records can share them any where. Comments in RED added by Dr Richard Fitton, ex-Caldicott Guardian, NHS Tameside & Glossop

With thanks to Nigel Landman, QT & C ltd

What is needed to improve compliance / concordance Build trust relationship through increased transparency Show the “planetary” systems revolving around the patient – what is available for them now! Help patients and their families to understand where they are, where they could be and how to get there Provide tools for patients – satellite navigation for healthcare Simple explanation of how to get the best care possible Move patients from being passive recipients to active partners…

What do they need for their care?

Appointment setting via EMIS Access What do they need for their care?

Prescription ordering What do they need for their care?

Access to full health record What do they need for their care?

Access to full health record What do they need for their care?

Free text as well as coded data with information links What do they need for their care?

Patient has access to letters What do they need for their care?

What do they need for their care?

What do they need for their care?

This could be part of an Integrated Care Pathway What do they need for their care?

What do they need for their care?

Governance Explicit consent process What information are patients provided with? How do we check that patients have understood the issues? Children and mental health Harmful data and 3 rd Party Data Can we provide proof for external scrutiny? Is it transferable to other providers? Local Care Record Development Board

What about those unable to give explicit consent eg in nursing homes Proportionality Pilot in Nursing Home Explicit consent should be sought first Lasting Power of Attorney Unable to give consent Nurses provided with IG training Enable access via EMIS Web / EMIS Access Identify issues and solutions – FAQs Enable access in Residential Homes Does it help to manage costs and enable QIPP

Opportunities / Challenges Move away from single solution towards multiple solutions depending on needs and acceptance Summary Care Record and Patient access to EHR and Advanced HealthSpace / Personal Health Records Knowledge-based healthcare systems Governance – let’s get consent right Jumping the chasm – political, economic, healthcare and personal pressures will drive change coupled with experience of innovators and early adopters Business model to be defined by late adopters Emergent change, getting requirements right, clinical engagement, GPs, Managing Budgets

Conclusion eMPOWERed patients need access to their medical records AND high quality information about their care AND how to manage it. e Medical Patient and the Public cOmmunication World wide web Electronic Record

Isn’t it time YOU got access to YOUR records and started using it to improve YOUR health and enter the world of REAL-TIME DIGITAL MEDICINE ? Dr A Hannan See my latest paper published in “Informatics in Primary Care” entitled: Providing patients on-line access to their primary care computerised medical records - a case study of sharing and caring