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

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
8 8
7
6 6 6
5 5 5 5 5
4 4 4
3 3 3 3 3
2 2 2
1 1 1 1
0
JAN FEB MAR APR MAY JUN JUL AUG SEPT OCT NOV DEC
Number of Drugs with Patient Interest Groups submissions
actual number of patient interest groups submissions
number of drugs submission to SMC(FULL & RE)

11. Patient Interest group submissions 2011
Number of Drugs with Patient Interest Groups submissions
actual number of patient interest groups submissions
8
Number of submission to SMC(FULL & RE)
6
6 6
4 5 5
7
6 6 6
5 5 5 5
2 4 3 3 4
3
11 11 22 12 2 3 4 112 2 4 4 22
0
JAN FEB MARCH APRIL MAY JUNE JULY AUG SEPT OCT NOV DEC

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
9
8
8
7
6 6
6
5 5 5
5
4 4 444
4
33
3
2 22
2
11
1
000 000 000 000 000 000
0
jan feb march April May June July Aug Sept Oct Nov Dec
Total Drug Submission to SMC Number of Drug Submission with a PIG
Actul Number of PIGs received

14. SMC decisions Jan 2010 - Dec 2011
Full and re submission only
accepted
26%
not accepted
42%
accepted
restricted
32%

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 Graham
Patient 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