Patient Access to Records & Transactional Services (PARTS)

1. Patient Access to Records & Transactional Services (PARTS) Welcome to the project launch. Please note that this event will be recorded. If you are joining by Webex, please do not close the page, we are due to begin shortly.

2. Patient Access to Records & Transactional Services(PARTS) Tad MatusChief Information Officer

3. What is “PARTS”? Patient online access to GP services and records, including: • book appointments • request repeat prescriptions • access test results • review medical history (consultations, diagnoses..) • view letters : GP and other health professionals • find out more about condition and treatment • securely message clinicians

4. Currently… • over half GPs have technical capacity to provide electronic access to records but less than 1% do. • 70% could offer transactional services, 30% do.

5. Power of Information Key Ambition:“A change in culture and mind-set, so that our health and care professionals, organisations and systems recognise that the information in each of our own care records is fundamentally about us – and so that it becomes routine for us to be able to access our own records online.”

6. Power of Information Commitments: • All NHS Patients will have secure online access, where they wish it, to their personal GP records by 2015 • Patients will be able to view online which GP Practices offer online access to records by 2013

7. Project Aims Establish demonstrator GP practice sites across Kent, Surrey and Sussex to: • Raise awareness of solutions, opportunities and benefits • Identify barriers to adoption and use • Recommend actions to address these • Inform and shape future roll-out strategies nationally and locally

8. Products • Benefits evaluation and case studies • Implementation Toolkit containing good practice examples • Status report: implementation, usage and attitudes • Follow-on recommendations to address risks and issues • Local network of PARTS practices and local champions

9. Objectives for Today • Raise awareness of the project • Explore the drivers for the project; why PARTS and why now? • Find out what’s already been achieved elsewhere for patients, practices and the NHS • Establish what GP systems can do / will do • Bring key stakeholders to join the discussion and get involved

10. “Systems” for CitizensNo Systems about me, without me Toto Anne Gronlund (and Philip Green)

11. The challenge • Seeing the patient as an active partner in care is a major cultural shift ...but we can feel there is real life in this. The buzz is as palpable as these smiles.

12. Benefits Management The paper chase GP & record Then a miracle occurs “The power of being practical” JW99

13. The Elephant in the RoomPhilip’s story With thanks to Philip Green, the story teller, and Pip Hardy and Tony Sumner of Pilgrim Projects, who provided the inspiration and technologies The elephant in the room

14. Why is information important? • How much of the patient’s time is spent on worrying about not having information ? Up to 70% of a professional’s time is spent on information

15. Information is one-sided power Shared information is a relationship of trust Cartoon with thanks to the British Medical Journal Patients and information are the two most under-used resources in the NHS Dr. Richard Fitton Information Governance is there to protect the patient, not the organisation or the professional Dame Fiona Caldicott

16. UNCLASSIFIED The vision Cornerstones to delivering transformation Open Outcomes World class Data Transparency Text Text Knowledge for all Customer choice and control Patient Voice and Insight Participation 16

17. Transparency and participation have transformed customer service in other sectors… so why not healthcare? • Online banking – a consumer success story • Launched in the US in 1994 and in the UK in 1998 • Now >22M adult users (>50% of computer users) • Consumer applications offered with digital banking • Access to records • Online banking offers access to personal bank account applications in a secure environment • Healthcare equivalent: access to the medical record • Ability to transact • Customers pay bills and receive payments • Healthcare equivalent: ability to receive test results • Ability to book appointments • Online banks offer real time facilities to book meetings and calls with advisers • Healthcare equivalent: ability to email your doctor 17 SOURCE: Financial Fraud Action UK

18. With thanks to live|work, Ealing PCT and the MS patients

19. Some observations by the G6 • If patients and people are not involved, how do we know that we are defining, collecting, accessing, sharing, analysing, using and reporting the right information to enable safe, quality care. • If we can’t see our records, how do we know they are right? • Who owns the data (does it matter) vs who has access to the data. • IG will become a patient responsibility too. • Information can be a ‘service’, decision aids, online selfassessment, peer groups, as well as record access

20. If Electronic Health Records remain electronic versions of the paper record, we will continue to get the same results as we did before, only faster.

21. G6, patient members and patient organisations now submitting ‘requirements’ for improvements to GP IT systems Patients joining System User Groups. GP2GP programme is working in targeted areas to increase patient awareness Draft of Safe Record Keeping Guidance for patients now complete – (BCS / G.Mynors) NHS North producing guidance and supporting practices and a diverse network of people supporting the RCGP led collaboration What is happening....

22. What will help.... • Clinical leadership & trust in your patients • The factorial expansion of information • Being pragmatic and creating a sustainable approach • Systems that are accessible • A healthy dose of emotional intelligence • Transparency • Beacons like PARTS !

23. Power to the People Paul Hodgkin on EHI, 2.10.2012 http://www.ehi.co.uk/insight/analysis/962/power-to-the-people. “Well, you would be forgiven for thinking that right now patients have used their new found health informatics just to look stuff up, seek out fellow suffers for mutual support, and – if they are lucky – to order the occasional repeat prescription online.But behind these mundane uses, a revolution is indeed gathering. Take a look at this infographic from PatientsLikeMe, which shows how 29,000 people with MS experience their illness and rate their medication. This is new, people-generated knowledge. I was a GP for 25 years, but I had no idea that ‘brain fog’ was one of the commonest symptoms for people with MS. It is only when 29,000 people come together that this kind of knowledge emerges.”

24. “watching the planet develop a nervous system of data.” “The crowd-sourced venture capitalizes on humanity’s new ability to collect, analyze, triangulate and visualize vast amounts of data, in real time” These data-hungry gadgets also harness “the power of connecting people with their own data and getting them to see how that could change their lives,” said Goetz. http://www.wired.com/wiredscience/2012/10/big-data-is-transforming-healthcare/

25. Partnership working

26. Tailored for patients

27. The Android app has been downloaded about 100,000 times. Since the launch, 3.3 million visits to kp.org, or about 15% of total visits to the site, have come from mobile devices, according to Kaiser officials. About 3.9 million members, or 63% of all eligible members, are using kp.org, according to Kaiser.

28. My challenge to you Help make the compelling case for a partnership approach to health, wellbeing and care…and unlock the vault of information Language embeds behaviours and attitudes, so please help build a new dialogue Words Matter to Us http://www.wordsmattertous.blogspot.co.ukt.gronlund@nhs.netcfh.ppi@nhs.net

29. myRecord Project Richard Ince Project Manager Anna Burns Research Coordinator

30. Project insights • Clinicians’ fears of data-sharing with patients • countering those concerns • improve efficiency, safety and improve relationships • Use learning to inform ways of supporting change in primary care

31. Changing cultures Clinician referral Engaged, empowered and informed patients

34. Available resources • www.myrecord.org.uk (Oct 2012) • richard.ince@nhs.net • anna.burns@nhs.net Thank you

35. Patient Feelings on Electronic Records Access: Benefits and Challenges Katie Wilson User Involvement Projects Officer, Diabetes UK

36. Background • The myRecord project commissioned Diabetes UK to speak to patients who are in regular contact with GP services – ‘users’ and ‘non-users’ • The aim was to explore the feelings associated with the ability to access their medical records online

37. Method • Five focus groups • Greyfriars Surgery, Hereford • St John’s Medical Practice, Lewisham • Diabetes UK • Semi-structured approach, using the same question framework for all • Participants were asked to think about; • Good feelings about RA • Difficult feelings about RA • Potential benefits of RA (impact on time, accessibility, quality of care)

38. Participants • We spoke to 12 ‘users’ • range of medical conditions • We spoke to 26 ‘non-users’ • 16 were people with diabetes

39. System users • General enthusiasm – in principle, a good idea • ‘Brilliant’ and ‘excellent’ • But, frustrated by administrative and technical difficulties • Current difficulties inhibiting full potential

40. System users – good feelings • Control and empowerment • the ability to ‘make informed choices’ • ‘Ammunition’ to get the care we need • Trust • No longer being ‘kept in the dark’ • ‘Puts you on an equal footing’ • Motivation • Track trends, ‘see the whole picture’ and set clear goals • An ‘incentive’ for improving health management • Reassurance • ‘holds the information you forget’ • Clarification

41. System users – difficult feelings • Anxiety • Misinterpretation of information • ‘needless worry’ • Lack of detailed information or gaps in the record • Security – divided opinions • Frustration • ‘Clunky’ system • Errors on records and ‘blocked’ information

42. System users - benefits • Saves time and improves efficiency • Reduces stress • Saves ‘effort’ and ‘energy’ and is an ‘instant fix’ • ‘Incredibly convenient’ • Added value • Enables preparation for appointments • Quality of care

43. Non-users • Initial reactions were fairly mixed • Some expressed active hostility • Some were indifferent • Some could see the potential benefit, but had concerns • Some were very positive • After discussions people were more positive, although still sceptical about security • Some remained indifferent

44. Non-users – good feelings • Control and empowerment • Increased ownership over their healthcare • ‘Greater autonomy and independence’ • ‘Information is power’ • Trust • Facilitating an ‘equal partnership’ with HCPs • Motivation • Care planning and goal setting (especially helpful for the groups of participants with diabetes) • A right • ‘I want it because it is mine’

45. Non-users – difficult feelings • Anxiety – information • ‘I’d rather not know, what you don’t know won’t hurt you’ • ‘I’m less concerned about the heavier stuff – the GP can keep it to himself’ • Worry that information would lack context and a full explanation • Anxiety – security • ‘opening the door’ to hackers

46. Non-users – benefits • Time saving and efficiency • Accessing information ‘when it suits you’ • ‘self service and on demand’ • Improving quality of care • More constructive appointments • Care planning and self management • Increasing knowledge and understanding • Help join up services and improve transparency

47. Closing comments • Agreement that for the right people, records access has the potential to be very beneficial • Particularly useful for those with long term conditions • ‘A practical tool to help you help yourself’ • Important to manage expectations

48. Thank you

49. Even Patients Can Do IT… 18th October 2012 Yvonne M Bennett Patient & PPG Secretary of Haughton Thornley Medical Centre Cartoon taken from www.mediclicks.net

50. … but it is not always easy • We live in an age of technology but that doesn’t mean everyone can use it • Some need more help than others but where from • We can use IT as a tool to manage our own & family health • Self care doesn’t mean NO care • If we suffer from asthma, drug addiction, cancer etc • We can be educated in managing the condition by our healthcare professional • There are 8760 hours in a year and we need to look after ourselves and family for 8756 of those