patient access to e-health records and information governance · patient access to e-health records...

Better Care Better Health Better Life

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


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


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)


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/


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)


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 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)


The Partnership of Trust

Presenter

Presentation Notes

As a doctor, I am an “expert” in what the NHS can offer the patient and also my experience of how to assess a patient and know how others have been dealt with by other providers. Traditionally we did things to patients who were “passive recipients of care”. However the patient is also a true “expert” because they know how the condition is affecting them, their spouse and their family. For example if the patient presents with backpain, then I might know what blood tests or scans to order and who to refer the patient to, The patient n the other hands knows how the backpain is preventing them from doing things, how it has kept their spouse awake all last night and how the family wanted to go on a climbing holiday in the summer but couldn’t because of the patient’s back pain. If now the 2 “experts” come together and I gain trust in the patient to tell me exactly how the condition is affecting the patient and the patient trusts me to offer the best the NHS can do and build a “partnership of trust” between us, then that leads to a common understanding of a way forwards (the management plan) with each agreeing and trusting each other and more likely to carry out the agreed tasks. The computer screen is the “3rd expert”if it is shared with the patient that can help each expert to be even more effective….


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

Presenter

Presentation Notes

I believe a Paradigm Shift in healthcare is taking place. For thousands of years, patients would come to a doctor with odd symptoms that made no sense to them. The doctor would do some “voodoo” with strange contraptions that at one end he sticks in his ear and at the other end puts on the patient’s chest and then pronounce that the patient has asthma or has perhaps suffered a heart attack. Almost overnight we have turned this upside down. Why? The first pre-requisite was for the healthcare system to change from a paper-based one to an electonic one (our practice became paperlight about 3 years ago. Every prescription is done electronically. Every consultation is done electronically. Every letter or message that comes into the practice is scanned on to the computer and then actioned - with an audit trail behind it showing who has seen it and actioned it, every test result comes back from the laboratory electronically and is filed (by the doctors) into the patient’s notes (ie there is still some human intervention). When patients see the clinician, almost everythng is available for the clinician on the computer in front of them. We very rarely have to look at the paper records. Secondly the internet has become readily available everywhere. Many people have access to the internet at home or at work, on their mobile phones (I even had a patient book an appointment to see me whilst sat in the waiting room for something else on his iPhone. I am sure he was showing off since all he had to do was walk up to the front desk but I guess he wanted to see all the available appointments and not just the next available one!). In fact everybody has access to the internet becaue it is FREELY available in the library and also in many community centres with free or greatly discounted courses teaching people how to go onto the internet. It is quite literally everywhere. Thirdly there has been an increase in the health literacy of the general population. That “voodoo” I referred to earlier has become less so as a result of programmes such as ER, casualty, morning chat programmes, articles in newspapers and magazines and of course the internet (with all its associated foibles). Generaly people are more aware of conditions such as asthma, diabetes, obesity, high blood pressure and their consequences. Fourthly we now have the ability for patients to access their electronic health records via the internet in real-time from any place and at any time if they so wish. Fifthly the choice agenda. Giving access to their medical records only becomes truly useful if they can then do something with that information ie look at what choice they can make and then act on the information to help them decide what choice they want (ideally with the clinician’s agreement Partnership of Trust but also recognising the patient’s autonomy). This makes them an active partner rather than a passive recipient of care Finally there is evidence emerging that by offering patients choice, they have better outcomes. Not surprising really because if a patient chooses to have a certain treatment because they agree to it or understand why it is beneficial or simply it fits with their lifestyle or work:life balance they are more likely to follow it through. This is the basis of the Paradigm Shift that is now taking place


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


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

Better Care Better Health Better Life 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…


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


Practice-based web portal: www.htmc.co.uk


Test Patient Record


Access to full health record Test Patient

Record


Access to full health record

Test Patient Record


Free text as well as coded data with information links

Test Patient Record


Test Patient Record


“Patients, Carers and Information are the most under-utilised resources the NHS has”

Dr Richard Fitton and Dr Hannan 2010


14% of the patient population (1627 patients) now have access to their GP electronic health records


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)


Are you eMPOWERed yet?

e Medical Patient and the Public cOmmunication World wide web Electronic Record


Explicit Consent Process


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


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)


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)


Assessing capacity


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?


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


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)


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


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?


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

[email protected] [email protected]

patient access to e-health records and information governance · patient access to e-health records...

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