Health Technologies: Making Choices, Spending Wisely NHSScotland Event Thursday 21 June 2012

1. Health Technologies: Making Choices, Spending Wisely NHSScotland Event Thursday 21 June 2012

2. Health technologies: making choices, spending wisely and public involvement

3. Public Involvement in making choices and spending wisely Helen Cadden Chair, Public Involvement Collaborative Public Partner, Scottish Medicines Consortium Member, Scottish Health Council Richard Norris Director, Scottish Health Council

4. Overarching Medicines and Technologies Group To provide strategic oversight of all assessment and advice for health technologies activity within the organisation. To facilitate synergy and joint working. To ensure that Healthcare Improvement Scotland’s health technologies work is aligned with the NHS Scotland Quality Strategy and the Scottish Government’s strategic approach to health technologies.

5. Public Involvement Collaborative Brings together patient and public representatives Representative on Overarching Medicines and Technologies Group Developing two-way dialogue and identifying public involvement issues – not just about shadowing Overarching Medicines and Technologies Group Agree areas of good practice in patient and public involvement Identify any gaps in involvement activities within the current areas of work

6. Public involvement collaborative structure Overarching Medicines and Technologies Group Public Involvement Collaborative Scottish Health Council Scottish Health Technologies Group Scottish Medicines Consortium Scottish Intercollegiate Guidelines Network Area Drug and Therapeutic Committee Representatives Scottish Antimicrobial Prescribing Group Patient and Public Involvement Group

7. Scottish Health Council Set up in 2005 to “support, ensure and monitor” patient focus and public involvement in the NHS 14 local offices across Scotland, National Chair and Committee Developed and implemented the Participation Standard Part of Healthcare Improvement Scotland and supports wider organisation to meet Duty of User Focus Publications and case studies on website: http://www.scottishhealthcouncil.org

9. Involving patients in assessing medicines for use in the NHS Scottish Medicines Consortium Patient and Public Involvement Group ensure that the needs of patients and the wider public are brought into focus during the Scottish Medicines Consortium decision-making process Integral part of the process - need a perspective from those who have experience of the disease or condition Three Patient and Public Involvement Group representatives on Scottish Medicines Consortium Summarise submissions from Patient Interest Groups

10. Patient interest groups submissions 2010

11. Patient Interest group submissions 2011

12. Scottish Medicines Consortium Evaluation: Impact of Public Involvement October 2003 to December 2007, 117 Patient Interest Group submissions presented for 97 new medicines 63% of those submissions supported by a Patient Interest Group were accepted or accepted with restrictions 2008 data

13. Patient Interest Group submissions January - June 2012

14. SMC decisions Jan 2010 - Dec 2011Full and re submission only

15. Area Drug and Therapeutic Committees One in each board – makes local decisions on what medicines are made available Individual Patient Treatment Requests Event in March bringing together Committee members from across Scotland Confusion over different terminology in different boards Variation in how and if members of public are involved Variation in understanding about decision making Agreed that Public Involvement Collaborative would produce Good Practice Toolkit

16. ‘Disinvestment‘ What does it mean? What questions do we ask the public? How do we ask the public? Does the public speak with a single voice? Do we accept what the public say? Work with National Institute for health and Clinical Excellence (NICE)

20. Karen GrahamPatient Involvement Officer, SIGN

21. What is SIGN? Scottish Intercollegiate Guidelines Network Set up in 1993 to produce guidelines for NHSScotland Initiative from medical Royal Colleges and other professional organisations SIGN has evolved over time to include other healthcare professionals, patients and lay representatives at all stages of our work

22. SIGN methodology Guidelines are developed by multidisciplinary nationally representative groups A systematic review is undertaken to identify and critically appraise the literature Recommendations are explicitly linked to the supporting evidence

23. Health technology : patient versions of guidelines

24. What is the purpose of patient versions of guidelines? To help patients and carers understand what the latest evidence supports around: diagnosis, treatment and self-care to empower patients to participate fully in decisions around management of their condition in discussion with healthcare professionals highlight for patients where there are areas of uncertainty

25. Developing patient versions with patients and carers Sub-group formed from main clinical guideline Highlight recommendations where there is a choice for patients or specific actions they may take Form a question, word an answer Additional content Simple language Draft edited by SIGN

26. Translation of recommendations into plain English Recommendation Patients with diabetes and CKD stages 3-5 should have their haemoglobin checked at least annually. Erythropoiesis stimulating agents should be considered in all patients with anaemia of chronic kidney disease, including those with diabetic kidney disease. Translation If you have advanced chronic kidney disease, you must have your haemoglobin levels checked at least once a year. You may get medication to help your body to make red blood cells.

27. Consultation with patients, carers and members of the public Draft distributed to relevant voluntary groups and members of the SIGN patient network for comment Draft edited and improved based on comments

28. Ensuring quality of patient versions Evidence based SIGN editorial group – accurate translation of the evidence? Plain English Campaign

29. The end result

30. Ensuring our patient versions are accessible

31. How can patient versions of guidelines help to promote patient choice? Allows priorities to become clear to patients and carers highlight to patients (and healthcare professionals!) those interventions which have the greatest evidence of benefit clearly identify treatments for which there is no evidence potentially reducing the use of/demand for unproven therapies identify lifestyle interventions and ways in which the patient can take steps to manage their condition potentially reducing unnecessary consultations

32. What have clinicians said about our patient versions? “Give patients clear, unbiased information in relation to therapies available and their effectiveness” “Using the patient version serves to let people know that there are nationally agreed interventions available” ““The patient version of the ASD guideline is very useful, we aim to give each family a copy. It is reassuring for families to have this information based on the latest evidence. We wouldn’t use anything else”.

33. What have patient groups said about our patient versions? “it answers questions that people go away with but do not actually ask, plus you can go back to it to recap, plus it even answers questions professionals have when asked a question by a carer or patient which can sometimes meet a ‘oh I don’t know’ and the patient, carer leaving with worry” “”if we were given these, we would need to see our GP less because we would know how to look after ourselves”

34. Group Task Work in groups to identify from the 4 patient versions provided: An area of clinical uncertainty An intervention with no evidence An intervention with no evidence of safety Some indications for self- care Some well established effective therapies An area where the patient has a clear choice to make