1. How do we achieve cost effective cancer treatments in the UK? Professor Peter Littlejohns Department of Public Health and Primary Care

2. Summary of talk – 3 key themes The question is not should you prioritise health care...... but how to. Rarely is there a “right “ answer..... so how you get to the answer is important The role of the patient and the public is crucial to the whole process

3. The Nature of Evidence Judgements have to be made

4. The role of social values Evidence based guidance can be viewed as a practical manifestation of social contracts in deliberative democracies to ensure the most efficient and ethical allocation of finite healthcare resources to its constituents To achieve its goal, social values as well as technical issues need to be considered and should reflect the social/political milieu in which the organisation exists

5. NICE’s Response

6. Involving the public through the Citizen Council http://www.radcliffe-oxford.com/

7. Future Research Agenda in Social Values and Patient and Public Involvement

8. First International Workshop February 2011 Convened by Peter Littlejohns (KCL) Albert Weale, (UCL) Supported by Wellcome and Nuffield Trusts Participants from: Johns Hopkins University – USA HAS – France HITAP – Thailand IQWIG – Germany NECA – Korea Renmin University – China WHO

9. Conclusions of workshop Lots of people telling you what you should do to achieve fair prioritisation of health care but very few tell you how to. Need for a new “practical” international research and policy network Goal is to develop a prioritisation tool kit for policy makers and patients and the public in support of prioritising health services fairly

10. Social Values Framework The processes of decision making Institutional setting Rules of decision making Accountability for decisions Participation in decision making The content of decision making Cost and clinical effectiveness Social value judgements Cost-sharing

11. Process values: Transparency How might we define transparency?  Everyone knows who makes decisions  Everyone knows who makes decisions and by what processes  Everyone knows who makes decisions, by what processes and for what reasons Basic transparency of institutional arrangements Transparency of institutional decision making processes Full transparency of institution, processes and criteria

12. Process Values: Accountability To whom is accountability owed?..... And accountability for what? Priority Setters Clinical effectiveness Value judgements Patients Clinical effectiveness Value judgements Health professionals Financial Expenditure Cost effectiveness TaxpayersInsurance payers Meeting basic entitlements The Courts

13. Process Values: Participation Who might participate? Patients, health professionals, experts, taxpayers, insurance payers, citizens…. Why value participation?  If people have their say, then they can’t complain at the result  Decisions are more legitimate if different interests can contribute  It improves the quality of decisions  Those whose money is being spent should have a say in what it’s used for The more of these reasons apply, the more we move from consultation to control.

14. Content Values: Clinical Effectiveness How to define clinical effectiveness?  Any intervention showing some evidence of benefit  Only interventions that definitely provide benefits  Only interventions that definitely provide benefit to patients, and are better than available alternatives Uncertain, lack of evidence, but available – solidarity? Certainty, good evidence but patients may wait Patients take a risk – autonomy? Minimal risk to patients – paternalist?

15. Content Values: Cost-Effectiveness How important is cost- effectiveness, relative to other values?  It’s just one factor amongst many and should not have privileged status  It’s one of the most important factors but not always decisive – however it might be unusual for other values to over-rule it  It’s of primary and decisive importance Strong focus on individual- related values, eg. dignity Less focus on individual-related values, more on collective ones, eg. opportunity costs Who benefits can be important Doesn’t matter who benefits – QALY is a QALY is a QALY

16. Content Values: Justice/Equity What might justice/equity require in priority setting?  All patients with the same condition should be treated the same  Some patients should be ‘positively’ prioritised because of their status – eg. vulnerable populations, the young, the poor, people with dependents  Some patients should be ‘negatively’ prioritised because they are responsible for their condition Health is the only relevant factor Factors other than health should be taken into consideration Treats all individual patients the same; expresses health solidarity; May consider people other than patient; may express socio- economic solidarity; Focus on individual; autonomy important; may factor in capacity to benefit.

17. Content Values: Solidarity What might solidarity require?  All have access to ‘comprehensive care’, however defined  All have access to a ‘basic package’, however defined  Entirely private arrangements Full social solidarity Partial solidarity Weak solidarity

18. Content Values: Autonomy How important is autonomy? Autonomy as personal preference and personal responsibility  We should give low priority to individual preferences, and individual responsibility should not condition access to treatment.  People should be able to exercise some preferences over some care  People are responsible for spending their own money and for their own lifestyle choices Individualistic focus for priorities Priorities set collectively

19. Launch of new programme

20. Future Research English Project As part of a new international research programme exploring the role of social values in health policy decisions we propose to test an emerging social values framework with the clinical commissioning groups. The aim is to develop and evaluate a social values, patient and public involvement tool kit to support CCGs in their responsibility to prioritise and comssion health care. The project will consist of 3 phases: (i)The draft social values framework will be introduced into a few localities in order to test its face validity, applicability and to explore potential methods and metrics to assess its impact. (ii)Develop a social values, patient and public involvement tool kit (SVPPIT) (iii)Test SVPPIT in a national study and evaluate its impact.

21. Thank you for your attention