NHS Digital Data Release Register - reformatted

Picker Institute Europe projects

Project 1
Project 2

10 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

🚩 Picker Institute Europe was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Picker Institute Europe may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

Project 1 — DARS-NIC-367152-K6Y1D

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y, N

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

Purposes: ()

Sensitive: Non Sensitive

When:2017.09 — 2017.05.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

MRIS - List Cleaning Report
MRIS - Personal Demographics Service

Objectives:

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.

** update December 2016 **

The original survey has been completed, and there has always been the intention to send a follow up survey 1 year after the first questionnaire to those men who consented to the first survey, to allow longitudinal assessment of outcomes.

Expected 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.

** update December 2016 **

As data has only recently been received by the University of Leeds the benefits currently remain as above. With the follow up cohort, as NHS Digital will clean the data for patient objections which reduces the risk of sending the survey to men who have opted out under that model. The repeated fact of death check also reduces the risk of distressing the men's family by not contacting them if they are deceased.

Outputs:

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 final data 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.

** update December 2016 **

The English Cohort part (Year 1) of the survey closed on 21st April 2016, with over 60% response rate. The Research Team in University of Leeds have received the final data file, so analysis is under way.
The next part of the Prostate Cancer project has already started. Mailings have been sent out for all Devolved Nations (Northern Ireland, Scotland and Wales). There is currently no finalised closing date for any of these cohorts. The aim is exactly the same as for the English Cohort, so separate final data files per cohort will be collated and sent to the research team, in the same format as before.

Processing:

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.

** update December 2016 **

The identifiers for those men who consented to the original survey were flagged by the Picker Institute and Public Health England (PHE) informed to update their cohort details. This means that the data shared with NHS Digital will be for those men who consented only.

PHE will send the cohort details (30,465) to the Picker Institute, who will then pass these onto NHS Digital for list cleaning with the same output as previously provided. Patient objections will apply.

Following the process of the first run, the cohort (split into part A (3000) and part B (27,645)) will be list cleaned multiple times. The first clean will occur once the agreement is approved to allow preparation of the survey once the cleaned data is received. Then subsequent cleans will be performed as needed (3x per cohort) as follow up letters are sent to the men regarding their response.

Project 2 — DARS-NIC-147770-1WNFL

Type of data: information not disclosed for TRE projects

Opt outs honoured: N

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012