It’s now been six months since I switched from maths to healthcare (Wow, time goes fast!) and I’m starting to understand the bigger picture of funding bodies, legislative restrictions, and government-affiliated organisations in the area.
Two of these bodies are the MRC (Medical Research Council) and NHS Digital (owners of most secondary care datasets), so I was keen to attend their “roadshow” event in York. The event outlined some of the major upcoming changes to the healthcare domain over the next few years, mainly arising from the EUs data protection law, GDPR. I’ve summarised some of the key points below whilst the slides from the event can be found here.
I managed to stock up on Betty’s tea whilst in York
There were five main talks throughout the day from representatives of both NHS Digital and the MRC. There’s a brief summary of the points I found interesting below.
1. Consent and legal basis, Alex Bailey
Current thinking around data protection legislation (and effect of GDPR), coming into effect in May 2018.
- GDPR should not have a massive impact on researchers, the main changes are to advertisers etc.
- The focus of new legislation is transparency via websites, leaflets, media campaigns etc.
- Researchers must explain the legal basis for their data collection (e.g. on project website).
- Researchers must have a transparency and fair processing statement available.
- Sensitive data can now be used for scientific research in the public interest (previously medical research only).
- The ICO has a list of the bare minimum to be done regarding transparency for each project.
2. Improvements to DARS, Garry Coleman and Alex Bailey
Planned improvements to the Data Access Research Service, and the MRC Research Clarity Portal.
- NHS Digital plans to streamline the DARS process.
- New 5 year data sharing agreement for archiving purposes.
- HDIS (interrogate HES data online before making full application).
- Working with CPRD and HRA-CAG to make section 251 approvals easier.
- Series of webinars about the changes from GDPR are planned shortly.
- MRC Research Clarity Portal plans to be a one-stop shop for advice on accessing health data.
3. Data Quality at NHS Digital, Andrew Heggs
Closer look at the data quality process used by NHS Digital.
- Mainly uses “business rules” i.e. does this column contain only integers > 0.
- DQMI initiative scores each healthcare trust over time in terms of data quality.
- Only uses simple binary checks on data at present.
- No checking of statistical distributions (i.e. heavy tails on returned datasets).
- List of automatically cleaned data items available online (link).
4. National Opt Out and GDPR, Heather Pinches
Updates on the National Opt Out programme for researchers.
- People can only opt out of secondary usage of data (i.e. research and planning of services).
- Goes live at same time as GDPR (25th May 2018).
- Only applies when section 251 is used, cannot opt out of anonymised data being used.
- Only applies in England, and must be at least 13 years old to opt out.
- All health bodies should be implementing this by 2020, phased roll-out to occur.
- The ICO guidance on anonymisation will likely change soon, which may impact the opt out programme.
5. Current and Upcoming Datasets in DARS, Garry Coleman
Updates on what data will be shortly made available to researchers.
- ONS mortality data will be renamed Civil Registration data, this accompanies legal changes that make it similar to HES.
- IG Toolkit will be made more technical soon (i.e. patching operating systems etc.)
- HDIS will let researchers view HES remotely before submitting full applications
- More datasets coming this year (mental health, maternity, staffing levels, electronic prescribing and pathology)