Uploaded byAlex Beisser MBCS
Health data - Is it safe?
The document discusses data governance in the NHS, emphasizing the importance of protecting patient information while ensuring it is shared appropriately for effective care. Key points include the necessity of consent, adherence to legislation, and the principles of data governance that guide how patient data is managed. It also highlights the challenges posed by inaccurate data and the evolving landscape of healthcare data sharing, underscoring the need for flexibility and patient involvement in data handling practices.
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Health data - Is it safe?
- 1. Health Data –Is it safe? A practitioner’s view of data governance in the modern NHS 10th December 2015 Head of Information Governance and Assurance NHS Healthcare Trust
- 2. Disclaimer The views expressedat this event are solely my own and they do not represent in any form the views of my employer.
- 3. Some questions tostart • How many of you had any interaction with the NHS over the last 6 months? • Have you ever received a letter meant for another person? • Do you trust your healthcare provider with your personal data?
- 4. Trust in healthcare •Which websites do you use to research medical conditions? • Write down 5 websites that you trust when looking up medical conditions or treatments. (not healthcare management or health IT related subjects)
- 5. Trusting information publishedonline Top 5 popular UK websites 1. 2. 3. 4. 5. Popular healthcare websites 1. 2. 3. 4. 5. Patient.co.uk netdoctor Choices H e a l t h Sources: Lexiconnect, Alexa and others
- 6. What to lookout for with online healthcare advice? Reliability Credibility TransparencySecurity Integrity
- 7. Personal experiences The Beissers Christmas2014 Magstadt
- 8. How does theNHS keep patient data safe? • Healthcare professionals (in general) want to make patients better and do things correctly • We are in business of treating patients and not sharing data for profit • Seeking consent before sharing data • Policy and governance frameworks in place to comply with legislation • Mandatory IG training programmes • Use of electronic systems to reduce the amount of paper being used • Boards are getting more and more interested in IG and Cyber Security
- 9. Information Governance - Whatis it all about? Only one piece of the bigger puzzle – Data is • everywhere • Inconstant • Incorrect • Duplicated • Outdated • In the wrong place • With the wrong person • Stuck together, in silos, not fit for purpose?
- 10. Information Governance inthe NHS • A set of best practice guidelines around the way the NHS receives, stores, handles, shares, archives and destroys information about patients, staff and contracts. • Data Protection Act 1998 and other NHS specific legislation such as the Care Act 2014, Health and Social Care Act 2012, Health and Social Care (Safety and Quality) Act 2015 • Links Clinical Governance to data processing and sharing • Caldicott Principles • Part of Trust’s Governance Framework
- 11. The NHS InformationGovernance Toolkit • Self-assessment of implementing good information management and governance principles • Aligned to ISO 27001/2 standards tailored for health, social care sector and organisations working with them • The outcomes and benefits depend on what you put into the tool • Internal / external audit (outside review is important) • Knowledge management system: Used correctly it is an important pillar in your organisation's governance framework
- 12. Caldicott 2 At theheart of managing data • Don’t keep data for yourself – share it when appropriate • Think about the bigger picture • How will your client receive care without the relevant data? • Sharing all the data just because it is easier? • How often do you talk to your Caldicott Guardian? • Do you know your counterparts in the organisations that you share data with? • Are you involving the patient in making decisions about sharing their data? • Do your service users know what you are talking about? Do they understand what happens with their data? • The 7th Caldicott principle is not an excuse for sharing data without any controls
- 13. EPR – Do theyfix our data governance problems? • Electronic Patient Record systems are an important tool • Assist and support healthcare providers to provide safe care • Link in with POC devices • Assist in sharing data safely (i.e. eDischarges) • Reduced amount of paper records? • All the data in one place • Data extraction with ease • Pseudonymisation of data to support research • Access control and third party access • Subject Access Requests (who has accessed my data?)
- 14. The Internet ofThings Source: Dr Prasad Bhave (2015), https://clinicalscientist.wordpress.com/tag/healthcare-it/
- 15. The Internet ofThings and its privacy concerns
- 16. Medical Devices Source: MassachusettsInstitute of Technology (2015), groups.csail.mit.edu
- 17. Do you trustyour medical device?
- 18. Mobile Apps –Are they medical devices? • Apple’s App store contains > 1,000,000 apps(32,000 lifestyle & 25,000 medical apps) Source: http://148apps.biz/app-store-metrics/?mpage=catcount • Medical Devices Directive (93/42/EC): – software and applies to…diagnosis, prevention, monitoring, treatment or alleviation of disease…(and other activities) – Apps are active medical devices if they meet medical device definition – Prescriptive advice on Class – Key concept is intended use • Misleading & Comparative Advertising Directive (2006/114/EC): – Benefits can only be advertised if evidenced
- 19. Medical devices –other things to consider • Who owns the data generated by medical devices? • How do we integrate this data into the care record? • Deprivation and social inclusion • Patient managed records • Online access to patient records • Where is the data stored? • Safe Harbour Agreement (European Court of Justice Ruling)
- 20. BOYD - Bringyour own disruption • Risks and Benefits – Things to consider: – Reduced costs in purchasing device – Management of device (who controls what software is installed?) – End-user support – Patch Management – Data leakage – Separation of work and private usage – Antivirus and Firewall software – Device encryption – Remote device control (if device is lost or stolen) – Data Management (remote data access; no local data storage) – Review existing corporate policies • Use training and awareness programmes to empower staff.
- 21. Health and SocialCare Integration • NHS Bodies and Local Authorities Partnership Arrangements Regulations 2000 • Pooled budgets underpinning the Better Care Fund • Care Act 2014 is the legal framework that support the sharing of services between the NHS and local authorities • Safer care outside hospitals in the community sharing scares resources (reducing duplicated visits; sharing workload and responsibilities) • Information Governance plays a big part in making the integration across diverse organisations as success
- 22. A practical example ConnectCare - Lewisham and Greenwich NHS Trust For more information see http://www.lewishamandgreenwich.nhs.uk/connectcare
- 23. Data sharing agreements: dynamicinstead of static sharing • Data sharing has involved over the last couple of years • Requirements for the use of data across organisational boarders • Data changes rapidly: As soon as it is shared; it may be already out of date • Integrating care across care domains requires flexibility and rapid adaptation to changes in patient’s conditions and care provision. • Funding is limited and budgets coming under constant scrutiny • Are you involving data subjects in how you are sharing their data?
- 24. Data governance - Howto deal with inaccurate data? • Expect that errors will happen • Map the flow of information • Plan on how to deal with these error before they happen • Include governance in the design of your pathways, systems and processes • Include partners straight away when you discover errors; inform them of incidents • Talk to the patients and carers affected: Duty of Candour • Don’t hide them away or think that somebody else will deal with them
- 25. The national dataguardian: Can everything be dealt with on a national level? • National guidance and baselines • Citizens should be able to expect basic compliance with data protection principles • Is the Data Protection Act 1998 still fit for purpose? • The European Data Protection Directive will bring changes • Local adaption of good practice; learning from others • Data will need to be shared between providers if we want to provide safe and effective care • Commissioners will need to work with providers and vice versa: Money is limited and does not grow on trees
- 26. What can theNHS learn from other countries? • Singapore • China • Indonesia • South America and Australia • Germany
- 27. The crystal ball: Whatwill the future hold for the NHS? • Less paper and more electronic systems • Integrated care pathways (across acute, mental health and social care) • Shared funding • Patient controlled records • Mobile health initiatives will show benefits of the managing long-term conditions • Expert patient programmes • Social inclusion • Privatisation and PFIs?
- 28. Information Governance inhealthcare - What to look out for? • Change will happen – be prepared for it • Patients are using social media Does your organisation? • Include data privacy at the outset of all projects • Commissioners will take their business to another provider if your organisation reports regular data breaches • Private providers may provide services cheaper; but will they be any better?
- 29. Summary • The DataProtection Act 1998 is not a barrier to share data • Be open about how you use and share your clients’ data • It could be your data that is used inappropriately • Listen to concerns • Use and share data with the consent of the data subject in mind • Think about the consequences of your organisation’s actions • Talk and consult with your stakeholders and experts in partner organisations • It is not about you or your organisation. It is about the patient.
- 30. Alex Beisser www.beisser.info alex@beisser.infoalexbeisser beissera
- 31. 31 New Year’s resolution#1: Be safe online!