New ways of measuring patients’ healthcare perspectives Alexandra Wyke PatientView

1. New ways of measuring patients’ healthcare perspectives Alexandra Wyke PatientView

2. The methodology described here was formulated by a loose alliance of organisations that have an interest in promoting more patient-friendly healthcare systems Juvenile Diabetes Research Foundation Limbless Association Patient Information Forum PatientView Royal College of Nursing Institute Roy Castle Lung Cancer Foundation Professionals United by Diabetes (PROUD) School of Health Science, University of Wales, Swansea Associate Parliamentary Limb-Loss Group Commissioning Health The Heller School for Social Policy and Management, Brandeis University Diabetes UK Developing Patient Partnerships Different Strokes emPOWER Charities Consortium Incontact (Action on Incontinence) … NICE and the NAO were present as observers

3. The initial project explored what patients mean by ‘quality of life’ (QoL) • The project aimed to develop an ambitious, catch-all, patient-friendly questionnaire • that can enable comparative data to be built up across disease areas on QoL issues • The first year of seed-corn funding for the UK-arm of this QoL study was provided by NovoNordisk

4. The methodology of ‘patients designing patient questionnaires’ was peer-reviewed • (published in July 2008)

5. Patients designing patient questionnaires: a two-stage methodology • Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions • The QoL study’s open-ended questions looked at patients’ understanding of QoL in the context • of their medical condition • - Groups were randomly selected from PatientView’s database of patient organisations. • - Organisations approached had diverse funding arrangements, from government to industry (pharma). • - The respondent body specialised in disparate medical conditions.

6. 20 SouthEast Local 46 15 London 14 33 West Midlands National 11 South West 10 13 North West Regional 9 East Anglia Global 6 7 North East 6 Yorkshire and North Humber 2 European 5 East Midlands 3 Wales Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions • Executives from 271 patient groups took part in the first stage of the QoL study • (conducted December 7th 2006 to January 24th 2007) • Respondent groups came from across England and Wales, and were varied in geographic remit. % of patient group responses

7. Neurological 9 Cancer 8 Mental health 7 Advocacy 4 Carers 3 Diabetes 3 Health (general) 3 learning 3 Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions • The 271 respondent groups covered a diverse array of specialties No condition predominated among respondents’ specialties, although 9% of the groups had interests related to neurological conditions Difficulties in % of patient group responses

8. Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions • Respondent groups were happy to be named—providing the study with significant transparency

9. Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions • Statements provided by patient groups were grouped into 31 unique categories, • which could subsequently be grouped into 3 types: • Access to, and excellence of, treatment and care. • Physical wellbeing as a result of care. • General outlook on life as a result of care.

10. Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions The Trafford Asian Women’s Network provided the following definition of QoL: “To have a way of life, and be able to use medical facilities, without worrying about the financial consequences.” This and similar observations were categorised under … Definition 9: Not being worried that financial considerations will prevent me from getting the medical treatment/care/support that I need. … which, in turn, was considered to belong to the class of statement identified as: Access to, and excellence of, treatment and care.

11. Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions A national group specialising in a rare, life-threatening, neurological disease provided the following definition: “Being able to live what remains of your life while managing the symptoms of the disease to the very highest standard, so that they are not the primary focus of one’s existence.” This and similar observations were categorised under … Definition 27: Feeling that my medical condition/disability does not dominate my life. … which, in turn, was considered to belong to the class of statement identified as General outlook on life as a result of care. … and so on

12. Stage 2. A patient survey, establishing individual priorities • The categories of statements derived from the patient group survey were subsequently • adapted into a multiple-choice questionnaire for patients. • In this second stage of the QoL study, 2,246 patients were recruited from across England and Wales • (with the support of patient organisations). Respondent patients were: • drawn from all age groups; • located in urban, suburban, rural and small town/village settings; • from a full range of income brackets (affluent, middle- and lower-income); and • 5% were non-white. • More women than men answered the survey, but respondents across the gender divide shared similar views.

13. Stage 2. A patient survey for establishing individual priorities • The categories of statements derived from the patient group survey were subsequently • adapted into a multiple-choice questionnaire for patients. • Respondent patients were asked to name the single most-important category that they felt could improve their QoL (given their individual medical circumstances) ...

14. Stage 2. A patient survey for establishing individual priorities QoL priorities for the majority of patients with cancer* QoL priorities for the majority of patients with arthritis * With a life expectancy of more than 5 years

15. Patients designing patient questionnaires • Further studies by PatientView using the methodology ... • Patient Safety, Clinical Quality and the Patient Experience of NHS Services in London • February-March 2008 • Commissioned by NHS London/Deloitte

16. Getting the best treatment/care 41 Not being harmed as result of error 22 Environment free of infection 19 Well-trained staff monitor environment 8 Clinical staff stick to treat/care guidelines 6 Understanding risks v benefits 5 Patients designing patient questionnaires • In the February-March 2008 NHS London/Deloitte survey, the approach helped gather the broad range of definitions that patients can hold for the meaning of ‘patient safety’—which, in turn, enabled patients’ priorities on the subject to be clarified Although stories about hospital-acquired infection dominate the media, respondents took a broader view of the overall meaning of the term ‘patient safety’. Infection and cleanliness was certainly not seen as the only, or the most significant, factor. Total = 608 patients/carers % of responses

17. Patients designing patient questionnaires • Currently ongoing study: • Patients’ Perspectives on How to Improve Services for People with Rheumatoid Arthritis (RA) • Commissioned by the National Audit Office

18. THANK YOU FOR LISTENING Alexandra Wyke, PhD CEO, PatientView Tel: 0044-(0)1547-520-965 info@patient-view.com