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Patient access to e-health records and Information Governance
Dr Amir Hannan Full-time General Practitioner
Haughton Thornley Medical Centres, Hyde (www.htmc.co.uk) Primary Care IT lead, Map of Medicine clinical lead, NHS North-West
Member of the Health Informatics Clinical Advisory Team, NHS NW (www.northwest.nhs.uk/hicat) [email protected]
1st November 2011
Cartoon taken from www.mediclicks.net
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Outline Challenge What I learned from Steve Jobs Data Protection Act and Patient Access to Records Information Governance vs Clinical Governance Partnership of Trust Paradigm Shift Enabling patients to access electronic health records: guidance for health professionals Patient Access to Records Explicit Consent process Nurse access in nursing home Challenges Access in Residential Homes
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Patient • I don’t know what I am on or why? • I seem to be here all the time ! • Nobody tells me anything and tells me off if I get it wrong
Clinician • I am working harder and harder but nobody appreciates me • I never do anything wrong – it’s everybody else’s fault • You are lucky you got ill this month, last month we were all focused on QOF!
Manager • Drop everything and focus on getting the points… • Do as I say for the good of our organisation • What do patients know about a complex healthcare system like the NHS ?
Recognise these?
(Not depicting any specific individual or organisation)
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What I learned from Jobs?
Experts are clueless Customers cannot tell you what they need Jump to the next curve The biggest challenges beget best work Design counts You can’t go wrong with big graphics and big fonts Changing your mind is a sign of intelligence “Value” is different from “price” A players hire A+ players Real CEOs demo Real CEOs ship Marketing boils down to providing unique value Bonus: Some things need to be believed to be seen
http://news.cnet.com/8301-13579_3-20117575-37/what-i-learned-from-steve-jobs/
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What records sharing is happening Patient in the consulting room In the GP surgery with clinicians and staff Maternity notes (with patient) Graphnet (with hospital) EMIS Web (with A&E, OOHs) SystmOne (with community) Summary Care Record (with A&E, hospital, OOH, Pharmacies, Prison, Walk-
in-Centres, patient) Birmingham hospital with liver transplant patients EMIS LV / PCS (with the patient)
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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
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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.
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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 11 07 2008 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)
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The Partnership of Trust
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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
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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 (a)at least one of the conditions in Schedule 2 is met, and (b)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.
Comments in RED added by Dr Richard Fitton, ex-Caldicott Guardian, NHS Tameside & Glossop
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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 purposes. Personal 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
Data Protection Act: SCHEDULE 1 The data protection principles
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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…
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Test Patient
I record my blood sugar, blood pressure, weight To help myself and the clinician Improve my self care I have 5 consultants in 3 hospitals No sharing of info even in the same hospital I print off relevant details of my records, graphs of results and effects of lifestyle changes on them and bring this to all my consultations This saves time and money for me and the NHS Average diabetic patient spends 2 hours 31 mins with a clinician and 8757 hours 29 mins on their own in a year! No surprises: Map of Medicine! Patient access to the records and the Map help to improve OUR UNDERSTANDING
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Practice-based web portal: www.htmc.co.uk
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Test Patient Record
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Test Patient Record
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Test Patient Record
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Access to full health record Test Patient
Record
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Access to full health record
Test Patient Record
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Free text as well as coded data with information links
Test Patient Record
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Test Patient Record
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Test Patient Record
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Practice-based web portal: www.htmc.co.uk
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“Patients, Carers and Information are the most under-utilised resources the NHS has”
Dr Richard Fitton and Dr Hannan 2010
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14% of the patient population (1627 patients) now have access to their GP electronic health records
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Involving Patients and Citizens
Empower the patient inside the consultation (front-line) Empower the patient inside the practice (PPG, Educational Programme) Empower the patient strategically in the organisation (PCT / CCG / Acute
Trust / SHA / DH) Empower the patient at national events to help change culture Empower the patient to teach other clinicians / managers Empower the patient to help each other Empower the patient wherever they may be Empowered patients NEED access to their own data AND trusted
information about their health (pathway, protocol)
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Are you eMPOWERed yet?
e Medical Patient and the Public cOmmunication World wide web Electronic Record
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Practice-based web portal: www.htmc.co.uk
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Practice-based web portal: www.htmc.co.uk
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Explicit Consent Process
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Errors in Records
Joy Project asked 50 patients to identify errors in GP electronic health records
10 out of 31 patients (32%) underlined a part of their record that was incorrect – Manual transcription error – Poor data entry – Other
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Patients entering data into the records
Corrections Blood pressures, weights etc Information about rare conditions they may have Difficulties they are facing with Activities of Daily Living Advanced Directives / Jehovah’s Witness statements Complaints (Cc’d to “personal doctor” / surgery)
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Nursing Homes and Access
Preparation Broadband internet and computers Order prescriptions online Policy for nursing staff access to records IG training for nurses (IT wraparound for access)
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Assessing capacity
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Nursing Homes and Access
Activation Assess resident’s ability to give consent Activate record for full access to GP electronic health
record Add code to record – “Care-giver access to e-health
record” Audit trail available to see at any time What about residential homes?
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What can you do to help • Help to raise the local debate from “who wants to know” to “who
is DOING this NOW?” • Can we really deliver high quality and contain costs without
Records Access? • Have we got PROPORTIONALITY right? What do you need to
assure yourself? • Help to build a vision of the majority of practices offering
Record Access as per White Paper 2-3 years from now! • Identify 2 or 3 practices NOW that wish to offer records access
and help to “nurture” them – they will help you to ask the right questions
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Patient • I know exactly where I am and why • I am now enjoying life and occasionally write about how well I feel • I regularly get praised for being a “model patient”
Clinician • I seem to achieve so much more even though I am managing more disease • We all make mistakes but I continually strive to learn from them • Do the right thing and the targets will take care of themselves
Manager • I realised that patients and clinicians / staff are my greatest assets • Provide the context for clinicians and patients to excel and give them their data! • Patients have helped to teach me how our local health community can do better
Recognise these?
(Not depicting any specific individual or organisation)
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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
www.htmc.co.uk
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Next steps Happy with the approach to IG / CG ? Make a commitment to offer records access? Prepare nursing homes to get access ? Want to get involved?
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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 Terri Holcroft