1 new ways of measuring patients’ healthcare perspectives alexandra wyke patientview
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New ways of measuring patients’ healthcare perspectives
Alexandra WykePatientView
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The methodology described here was formulated by a loose alliance of organisations that have an interest in promoting more patient-friendly healthcare systems
Associate Parliamentary Limb-Loss GroupCommissioning HealthThe Heller School for Social Policy and Management, Brandeis UniversityDiabetes UKDeveloping Patient PartnershipsDifferent StrokesemPOWER Charities ConsortiumIncontact (Action on Incontinence)
Juvenile Diabetes Research FoundationLimbless AssociationPatient Information ForumPatientViewRoyal College of Nursing InstituteRoy Castle Lung Cancer FoundationProfessionals United by Diabetes (PROUD)School of Health Science, University of Wales, Swansea
… NICE and the NAO were present as observers
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The initial project explored what patients mean by ‘quality of life’ (QoL)
The project aimed to develop an ambitious, catch-all, patient-friendly questionnairethat 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
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The methodology of ‘patients designing patient questionnaires’ was peer-reviewed (published in July 2008)
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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 contextof 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.
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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.
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South East
London
West Midlands
South West
North West
East Anglia
North East
Yorkshire and North Humber
East Midlands
Wales
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Local
National
Regional
Global
European
% of patient group responses
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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The 271 respondent groups covered a diverse array of specialties
% of patient group responses
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Neurological
Cancer
Mental health
Advocacy
Carers
Diabetes
Health (general)
learningDifficulties in
No condition predominated among respondents’ specialties, although 9% of the groups had interests related to neurological conditions
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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Respondent groups were happy to be named—providing the study with significant transparency
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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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.
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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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 mefrom 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.
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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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 diseaseto 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
Stage 1. Senior executives of patient groups were surveyed and posed open-ended questions
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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.
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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) ...
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Rank Factor %
= 1 Being relatively free of pain and bodily discomfort 11
= 1 Not having to fight the system to receive medical care 11
= 1 Feeling that I can retain my independence 11
4 Getting the correct medical treatment/care 10
5 Feeling largely in control of my life 7
= 6 Coping with daily living in dignity 6
= 6 Being able to lead a normal (or near-normal) life 6
Rank Factor %
1 Getting the correct medical treatment/care/support 15
= 2 Being satisfied with the medical care I am receiving 7
= 2 Sufficiently skilled and expert healthcare professionals 7
= 2 Feeling sure that the doctor is listening to my own opinions 7
= 5 Being able to lead a normal (or near-normal) life 5
= 5 Feeling largely in control of my life 5
7 Not having to fight the system to receive the medical care 4
= 8 Knowing that scientists are working hard to find a cure 3
= 8 Coping with daily living in dignity 3
= 8 Feeling that I can accept my condition as a real fact 3
QoL priorities for the majority of patients with arthritis
QoL priorities for the majority of patients with cancer*
Stage 2. A patient survey for establishing individual priorities
* With a life expectancy of more than 5 years
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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
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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
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Getting the best treatment/care
Not being harmed as result of error
Environment free of infection
Well-trained staff monitor environment
Clinical staff stick to treat/care guidelines
Understanding risks v benefits
Total = 608 patients/carers % of responses
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.
Patients designing patient questionnaires
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Currently ongoing study:
Patients’ Perspectives on How to Improve Services for People with Rheumatoid Arthritis (RA)
Commissioned by the National Audit Office
Patients designing patient questionnaires
