1. www.hqip.org.uk HQIP update and patient and public involvement Kim Rezel PPI lead

2. Who are HQIP?

3. Our work National Clinical Audit Programme 30+ national audits covering: Acute Cancer Children and Women's Health Heart Long-term Conditions Mental Health Older People Clinical Outcome Review Programmes 4 ongoing national programmes: Maternal, Newborn and Infant Medical & Surgical Mental Health Child Health Programme National Joint Registry Collects joint replacement information, monitoring implant, hospital and surgeon performance: Holds 1.75m+ records Includes hips, knees, ankles, elbows and shoulders Covers England, Wales and Northern Ireland Mandatory for NHS since 2011 Quality Improvement and Development Supports QI at local level via: Evidence based guidance Practical tools and case studies Patient and public involvement Regional training events eLearning and webinars Network Support

4. Quality assessment report 2014 Centre for Healthcare Improvement Over 50 responses Quality improvement seminar Feedback will determine how to approach the next phase

5. Consultant outcomes publication COP update – Wash up meeting last month – NHS Choices/SUN meeting – see blogsee blog NJR update

6. Improving access to data Annual Report via a new, dedicated website. Launched September ‘14 with interactive reports launching in March ‘15 www.njrreports.org.uk Consultant surgeon information published for the second time in Nov ‘14 with corresponding hospital information to be enhanced March ‘15 www.njrsurgeonhospitalprofile.org.uk

7. QID team Resource update – Information governance – QI methodologies – Root cause analysis – Junior doctors – Boards guide and Good Governance Handbook http://www.hqip.org.uk/boards-and-clinical-audit/

8. QID plan 15-16 New resources – Social care manuals – Good governance between organisations – Ensuring data quality – Introduction to statistics – Templates

9. Information Governance Clinical audit patient leaflet

10. Purpose of leaflet This leaflet describes how your data is used in clinical audit. In the NHS we aim to provide you with the highest quality of healthcare. To do this we must keep records about you, your health and the care we have provided or plan to provide you. Your data may be collected to check the quality of care using clinical audit.

11. What do patients need to know Who may access my data? Where is my data collected from? Why is my data collected? How is it kept safe and confidential? Opting out option Implied consent Explicit consent Section 251 Getting involved Useful links

12. The template What is clinical audit? – Local – Regional – National Some definitions

13. Anonymised Data prepared from personal information, but not anything that can identify a person.

14. Pseudonimised Pseudonimsed Data is anonymous to the people who hold or receive it (eg. the audit team), but contains information or codes that would allow others (eg. those responsible for your care) to identify someone from it.

15. Identifiable data Personal Identifiable Data (PID) is any information that can identify one person. This could be one piece of data (eg. a person’s name). Or a collection of information (eg. name, address and date of birth).

16. Patient identifiers Any code used to uniquely identify a patient within a health regiser or a health records system (eg. your NHS number).

17. OPT OUT If you do not wish your data to be shared for the purpose of a clinical audit you should let your care provider know and complete an OPT OUT form and this will be recorded in your medical records. If you are happy for your data to be used you don’t have to do anything – this is called IMPLIED CONSENT

18. Explicit consent Some national clinical audits will require your explicit consent, and this is when you will be asked to sign a form that states that you allow your data to be used for the national clinical audit project

19. NJR example

20. Patient consent form www.njrcentre.org.uk Two sides How does the NJR help patients? Is my information safe? Find out more Do I give my consent?

21. How the leaflet was developed Central Southern – Commissioning Support Unit HQIP staff Service User Network

22. Where to find more information NHS Choices NHS England Care.data Health and Social Care Information Centre Example of consent forms – NJR websiteNJR website

23. BREAK www.hqip.org.uk Kim.rezel@hqip.org.uk 020 7997 7370

24. Patient and public involvement

25. What do we mean by INVOLVEMENT How patients and the public will be involved in the structures and process of the work i.e. through mechanisms such as governance, priority setting, teaching and education, identification of the need for innovation, assessment of technologies. Oxford Academic Health Science Network ENGAGEMENT How patients and their carers will be supported to be active participants in their own care through approaches such as personalised care planning and shared decision-making. EXPERIENCE How the subjective experience of patients is captured and utilised for quality improvement

26. Why involve service users and carers? Ask different questions – change the agenda Ground experience Different priorities Use different methods e.g. face to face interviews Develop different instruments – user-valued outcome measures Shed new light on old questions – challenge our assumptions Hidden talents amongst ‘service users’ Aid recruitment, dissemination & implementation Required by funders Morally right – public- funded research of public services Capacity building Empowering service users Fun!

27. HQIP Service User Network The Service User Network, established soon after HQIP in 2009.Service User Network

28. QID team involvement Resource review PPI workshops – 15-16 National voices 4PI - http://www.nsun.org.uk/http://www.nsun.org.uk/

29. NCAPOP Producing easily accessible reports The suppliers Steering groups Sub-committees

30. PPI in your clinical audit programme Flipchart exercise What PPI is there in your organisation’s clinical audit programme? What PPI would you like to see?

31. Some examples Where to start? – Attending service user forumsAttending service user forums Other options - Student placementsStudent placements Getting there - Patient representatives on CAGPatient representatives on CAG Gold standard - Patient PanelsPatient Panels

32. Patient panels A guide to developing a patient panel for clinical audit A guide to developing a patient panel for clinical audit

33. Shrewsbury and Telford Hospital NHS Trust Three main objectives Gain board sign-off Develop policies, roles and responsibilities, contracts Train interested volunteers

34. Data collecting Responsive to local needs Project continuation Organisational buy-in Patient perspective Improved outcomes Benefits of PPI in clinical audit

35. PPI strategy http://www.nsun.org.uk/about-us/our-work/national- involvement-partnership/ Principles – Shared values Purpose – Clear and can be measured against Presence – Who and where Process – Accessibility and alternative methods Impact – Ask questions about the difference PPI has made to the project

36. Thank you HQIP Service User Network www.hqip.org.uk Kim Rezel 020 7997 7372 Kim.rezel@hqip.org.uk