Health data sharing Not Applicable
Conditions
Interventions
This study is an anonymous online survey to establish patient and public views on the sharing of identifiable health data for clinical purposes, and de-identified health data for research within the U
HSC in Northern Ireland). Recent literature reviews of public attitudes to using patient health data for research noted there were few studies relating to the acceptability of sharing patient health d
Sponsors
Cambridgeshire and Peterborough NHS Foundation Trust
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: 1. Participant is willing and able to give informed consent for participation in the study 2. Participant currently resides in the UK 3. Participant is able to access the online survey
Exclusion criteria
Exclusion criteria: Under 16 years of age without parent or guardian permission (the researchers have put 8 as a lower age limit as one is required; they would not wish to exclude anyone with parental permission on the basis of age but the numbers of participants < 16 is likely to be very low)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Views on how health data may be shared across the UK, how these are related to demographic variables, and how opinions on sharing mental versus physical health data are affected by the framing of risk versus benefit. All preferences in relation to data sharing will be measured using Likert-style scales, yielding interval/ordinal data on preferences (e.g. "very unlikely to share"/"strongly disagree" through to "very likely to share"). Self-reported overall degree of support for: 1. Sharing physical health data for NHS clinical care without explicit consent each time, and how far such sharing should extend 2. Likewise for mental health data 3. Sharing de-identified structured physical health data for research without explicit consent, and how far such sharing should extend (e.g. NHS, academic, charities, industry, publicly) 4. Likewise for mental health data 5. As for 3 but with de-identified free text data 6. As for 4 but with de-identified free text data Measured using an online survey at a single timepoint | — |
Secondary
| Measure | Time frame |
|---|---|
| Views on the design of a national consent form and on whether there should be a separate national web portal for mental health research as well as views on data linkage. Secondary measures will include: 1. The effect of the framing interventions 2. The degree of support for a single national sign-up mechanism for sharing one's health data for clinical care and/or research 3. Views on a prototype national NHS data sharing consent form 4. Views on trusted-third-party linkages between health data and a range of other UK state-held data sources (e.g. education, criminal justice) Measured using an online survey at a single timepoint | — |
Countries
England, Scotland, United Kingdom
Contacts
Public ContactLinda Jones
Outcome results
None listed