Driving Quality and Equity through PREMs and PROMs Michelle Price, Consultant Therapist for Stroke and Neurological Conditions Powys Teaching Health Board

Patient Reported Outcome Measures (PROMs)  Patient Reported Outcome Measures (PROMs) are standardized, validated question sets to measure patients’ perceptions of factors such as:  their health status (impairment)  their functional status (disability)  and their health-related quality of life (well-being) (Kings Fund, 2009)

Patient Reported Experience Measures (PREM)  Patient Experience is defined as “What it feels like to be a user of the NHS in Wales” and not only includes people who use Health Services in any setting but their families and unpaid carers.  A patient reported experience measure is any method of understanding the experience of individual or groups of patients.  Responses are often collected directly from the patient via self- administered questionnaires completed by the patient themselves or via interviews.

Background  Delivery Plans for Stroke and Neurological Conditions included actions for implementing PREM and PROM  Purpose is to evaluate and inform improvements in the quality and equity of services for people living with stroke and neurological condition in Wales over time  Implementation Groups for both plans agreed that it would be most useful to have high level measures that enables services for stroke and all neurological conditions to be compared  The £2m funding that was made available for implementation of plans highlighted the need to be able to allocate and evaluate of the funding in a meaningful way that includes the patients perspective  A small working group was established including clinicians, third sector representatives, Public Health Wales, Welsh Government and National Wales Information Service

Joining up the dots  What  Baseline- what is already happening in health boards across Wales  What instruments are already validated for use in UK  Who  New Community Clinical Information System (NWIS)  Stroke Sentinel National Audit Programme  How  National steering group for PREMs, focussing on Orthopaedics and Orthoptics  Redesign of NHS web services (NWIS)  When  As soon as possible

Working Together- PREM  To be successful service users, carers and clinicians need to be involved every step of the way  Mike Spencer from 1000 Lives and Public Health Wales has focussed to date on developing PREM  4 focus groups across Wales- 32 people attended  Conditions represented: dystonia, myalgic encephalopathy, multiple sclerosis, brain injury, Huntindon’s disease, MND, cerebellar ataxia, epilepsy, optical myasthenia, cerebral palsy, spastic ataxia, Parkinson’s disease, Friedreich’s ataxia  Themes  Diagnosis; ongoing and continuity of care; Impact on others; Research; Information and Support  Draft questionnaire is being designed  Need to test it with service users, carers and clinicians  There has been some discussion of whether there need to be a separate PREM for stroke

Working Together- PROM Cedar have extensive experience in: supporting links between NHS and academia, e.g. supporting development of NICE Guidelines developing and validating PROMs (Withers et al 2014, Withers et al 2015a, Withers et al 2015b, White et al 2015)  Have access to an international database of all patient reported outcome measures (PROQOLID), which specifies conditions of use for each tool  Have been working with NWIS to develop an All-Wales programme (using a national platform hosted by NHSWales website to administer collect, collate and analyse PROMs and PREMs. Generic questionnaires will be used for all patients attending hospitals in Wales. Condition- specific elements will be added over time, initially for orthopaedics. The International Consortium for Health Outcomes Measurement (ICHOM) is a non-profit organization with the purpose to transform health care systems worldwide by measuring and reporting patient outcomes in a standardized way. An OT from ABHB was one of 2 UK reps on group developing stroke standard set. ABHB have also been piloting the PD standard set. ICHOM has not been validated in the UK to date

Your help with next steps  More links  Academic institutions who may have expertise in validating PROMs  Organisations, both NHS and third sector who are in process of developing or are using PREMs and PROMs  Wider consultation  Service users, third sector and NHS teams  Testing  Service users, carers and clinicians

Timescales and dependencies What  Test and develop paper versions of PREM  Agree and validate a PROM  Test PROM Who  Roll out of CCIS to enable identification of service users How  Roll out dependent on national programme, need to push for stroke and neurological conditions to be the next priority after orthopaedics and orthoptics When  PREM within next 12 months  PROM will take longer depending on validation