NHS Digital Data Release Register - reformatted

Picker Institute Europe

Opt outs honoured: N

Basis: Section 251 approval is in place for the flow of identifiable data

Format: Identifiable Non Sensitive

How often: Ongoing

When: unknown — 11/2016

HSCIC Id: DARS-NIC-147770-1WNFL-v0.0

Data: MRIS - List Cleaning Report

Data: MRIS - List Cleaning Report

Data: MRIS - Personal Demographics Service

Output: The first output will be the survey itself. The applicant will send the PROMs questionnaire to prostate cancer patients in England, Scotland, Wales and Northern Ireland asking a variety of questions about their care and their quality of life. Those who respond will be sent a follow up questionnaires on an annual a year later asking the same questions. The target date for the first mailing is 5th October 2015, with the fieldwork continuing for three years.
Picker Institute Europe will present the research team at University of Leeds with a finaldata file once the fieldwork is complete from which the research team will carry out various analyses. This data file will consist of case data and will contain sampling information –, NHS trust and reference number - alongside the response data from the questionnaire. The mailing data will not be included in this submission, so names, addresses, year of birth and NHS numbers will not be present.
This data will contribute to a report presented to the funders: Prostate Cancer UK and the Movember foundation and a series of papers submitted to peer-reviewed journals. It is not yet known exactly what the articles will be on and where they will appear, but there is a large research team and it is hoped that there will be many outputs from this rich data source.

Activities: A csv file will be prepared to be sent to HSCIC for list cleaning with details of patient surnames and forenames, NHS numbers and date of births. Picker Institute Europe require HSCIC to identify those patients that have died as well as providing back the patient's NHS Numbers, forenames and surnames, addresses and postcodes.

Objective: Objective for processing: To conduct death checks, retrieve patient addresses and data verification (of the data included in the CVS sent to HSCIC) for the purposes of administering a PROM survey of men with prostate cancer.

Benefits: Clinical and scientific progress in managing prostate cancer will only bring benefits in terms of well-being and survival for patients if we develop comprehensive and clinically meaningful approaches to measuring the important patient outcomes.
Primary aims
• To describe the Health-Related Quality of Life (HRQL, e.g., physical, psychosocial) of men with prostate cancer using qualitative and quantitative methods;
• To explore if and how their HRQL is associated (cross-sectional) or is predicted by (longitudinal) disease, treatment and/or patient characteristics with a view to inform development of health care policy and service delivery in ways that better meet the needs of such men and their families;
• To describe the levels of patient empowerment and undertake preliminary exploration of the interaction between patient empowerment and HRQL.
Secondary aims
• To collect data to support, if possible, provider variation and health economic analyses especially for the longitudinal work;
• To analyse the questionnaire data collected by exploring and checking the psychometric properties (e.g., reliability, validity) of the newer, less well-established questionnaire measures and to investigate the possibility of developing an item-bank for HRQL assessment for use with men living with and beyond prostate cancer using Rasch models. Qualitative interviews will be used to identify ‘gaps’ in surveys of importance to patients and patient partners with a view to adding additional items/questionnaires in the second surveys.
• To explore the acceptability/options of electronic PROMs data collection in this cohort and acceptability of real time feedback to service providers to influence/support direct patient care.
The commercial aspect of this application does not, however, detract from the numerous and varied health-related benefits of the project, notably with regards to the insight into life with prostate cancer and intention to improve clinical treatment and policy going forward (see above). This work will ultimately inform clinicians and the NHS about prostate cancer sufferers and in turn help drive improvements to treatment. Picker Institute Europe is a health research charity, and this project supports the organisation's overarching objective to improve patient experience and healthcare.

Source: NHS Digital.