1. Patients and their physicians: advocacy and new technologies Charlie Tomson Consultant Nephrologist, Bristol Past-President, Renal Association Wessex Physicians Club 13 November 2012, 11.35-12.30 Conflicts of interest: none

2. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

3. Hands up, anyone who has been on the receiving end of healthcare

4. Terminology Empowerment Engagement Activation Shared decision-making Patient decision aids

5. Shared decision-making A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a system for recording and implementing patient’s informed preferences Coulter and Collins. Kings Fund 2011.

6. Patient decision aids Decision support aids can be simple, in the form of a treatment option table, or more complex in the form of interactive questionnaire/tool, which are increasingly available online. Both interventions seek to offer patients an understanding of the range of options available to them and the implications of those options These tools are designed to be used as the basis of support for that individual to make a decision. A decision aid can be used both as part of the patient consultation and by the individual before or after a consultation. A recent Cochrane review on the use of decision aids amongst people facing treatment or screening decisions that are consistent with the patient’s values and improve communication between the clinician and the patient, allowing greater participation in decision making http://summaries.cochrane.org/CD001431/decision-aids-to-help-people-facing- health-or-screening-decisions

7. Copyright ©2004 BMJ Publishing Group Ltd. Epping-Jordan, J E et al. Qual Saf Health Care 2004;13:299-305 Figure 1 The Chronic Care Model (CCM).

8. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

9. Wanless. Securing Our Future Health: Taking a long-term view. 2002.

11. Patients want reliable information Is the NHS becoming more patient-centred? Trends from the national surveys of NHS patients in England 2002-2007 Picker Institute, 9/07

12. Decision Aids reduce rates of discretionary surgery RR=0.76 (0.6, 0.9) O’Connor et al., Cochrane Library, 2009

13. N Engl J Med 2012: 366: 780-781 So that’s where the Coalition got their catchphrase from!

14. Ethical imperative: ensure that patients receive ‘the care they need and no less, the care they want and no more’ Overlap with self-management support and personalised care planning Appropriate for decisions about tests, procedures, self-management or psychological intervention, drug treatment, lifestyle change Embedding SDM into routine care will require PDAs; identification of ‘decision points’; provision, recording, and support for SDM by providers; training; incentivisation; inclusion in contracts Kings Fund 2011. www.kingsfund.org.uk

15. Misdiagnosis of patient’s preferences is commonplace Better diagnosis will ensure that –Patients get the treatment they would choose if they were well informed –The NHS aspiration to create an ‘internal market’ will be realised –The NHS will save billions – because patients choose fewer (and less invasive) treatments when fully informed Kings Fund 2012. www.kingsfund.org.uk

16. NHS Constitution You have the right –to be given information about your proposed treatment in advance, including any significant risks, any alternative treatments which may be involved, and the risks involved in doing nothing –to access your own health records. These will always be used to manage your treatment in your best interests –to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this

17. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

19. Confusing dedication to patient care with patient-centred care Allan R. Clinical Medicine 2011; 11: 107-108

20. GRADE: Strength of recommendation Level Implications PatientsCliniciansPolicy 1 “We recommend” Most people in your situation would want the recommended course of action and only a small proportion would not Most patients should receive the recommended course of action The recommendation can be evaluated as a candidate for developing a policy or a performance measure 2 “We suggest” The majority of people in your situation would want the recommended course of action, but many would not Different choices will be appropriate for different patients. Each patient needs help to arrive at a management decision consistent with her or his values and preferences There is a need for substantial debate and involvement of stakeholders

21. Preferences: desirability of a healthcare outcome –Patient with mild BP+ may prefer to avoid drug treatment despite not reaching guideline ‘target’ –Surgeon with lone AF may choose to have warfarin – minor CVA would be career-ending –PSA screening may prolong life but reduces quality- adjusted life expectancy Preferences relatively ignored in EBM until recently J Am Med Assoc 2008;300: 436-438

22. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

23. Patient activation measure 22- and 13-item questionnaires, asking about beliefs, knowledge, and confidence relating to health/healthcare Can be used at the individual patient level to provide coaching High activation associated with behaviours likely to benefit health Interventions that increase PAM score also increase adoption of healthy behaviours High PAM score associated with high trust NHS Kidney Care. Summary of the Evidence on Performance of the Patient Activation Measure. May 2012.

24. 1.When all is said and done, I am the person who is responsible for taking care of my health Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.Taking an active role in my own health care is the most important thing that affects my health Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident I can help prevent or reduce problems associated with my health Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I know what each of my prescribed medications doDisagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident that I can tell whether I need to go to the doctor or whether I can take care of a health problem myself. Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident that I can tell a doctor concerns I have even when he or she does not ask. Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident that I can follow through on medical treatments I may need to do at home Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I understand my health problems and what causes them. Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I know what treatments are available for my health problems Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I have been able to maintain (keep up with) lifestyle changes, like eating right or exercising Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I know how to prevent problems with my healthDisagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident I can figure out solutions when new problems arise with my health. Disagree Strongly DisagreeAgreeAgree Strongly N/A 1.I am confident that I can maintain lifestyle changes, like eating right and exercising, even during times of stress. Disagree Strongly DisagreeAgreeAgree Strongly N/A

25. Patient activation measure

26. ‘SURE’ questionnaire

27. Other measurement options Range of free, validated measurement instruments from Ottawa –Decision regret scale –Decisional conflict score –Preparation for decision-making –Stage of decision-making –Effective consumer scale

28. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

29. Patient decision aids Aim to do three things to prepare someone to make a healthcare decision: –Provide facts about the person’s condition, the options, and their features –Help patients to clarify their own values (the features that matter most to them) –Help patients to share their beliefs with their healthcare professional and others, so that a course of action can be planned that matches their values IPDAS – International Patient Decision Aid Standards Collaboration www.ipdas.ohri.ca

31. + 3 boxes for ‘daily routine’, ‘daily sugar testing’, ‘side effects’

32. Personalised risk scores 64y, male, moderate smoker, type 2 DM, Chol:HDL 6.0, SBP 154, weight 90kg, height 170cm What if statins, get to BMI 25, stop smoking, get SBP down to 140? http://QIntervention.org

33. http://mayoresearch.mayo.edu/mayo/research/ker_unit/upload/StatinDecAid_ ELEV_Mayo.pdf

35. QIPP Right Care programme http://sdm.rightcare.nhs.uk/pda

37. Outline Jargon: empowerment, activation, shared decision-making Why are policy-makers so interested? Why should physicians be interested? Measurement Patient decision aids Renal Patient View

38. Website giving kidney patients access to test results, letters, diagnoses, plus explanations, patient forum Option to record BP and other information e.g. QoL scores –Not yet ‘written back’ into renal IT systems Capitation fee £3.00 per patient per year Available in most, but not all, UK centres

46. Future plans and possibilities Collect home BP, blood glucose, etc via RPV Collect PROMs, PREMs, and measures of decision quality via RPV Provide individualised PDAs, based on age, PRD, co-morbidity, previous history, to inform future decisions Provide ‘what are my options for treatment’ version of clinical practice guidelines

47. Summary The extent to which patients make decisions about healthcare based on their own preferences and values –Is a predictor of health-related behaviour, including adherence to Rx –Can be increased by interventions, e.g. use of PDAs, or even simple overt ascertainment of values and preferences –Is a marker of high-quality healthcare