Session 30: Mental Health Data
Chaired by Dr Marc Farr, Founder, Beautiful Information Ltd and focusing on mental health data and vaccine data, our final Open Data Saves Lives session of 2021 on Thursday 9 December saw 38 participants.
Joining us were:
- Kate Croft, Lead Information Manager, Data Services Directorate, NHS Digital - Powerpoint
- Paul Jennings, Analytical Section Head, Data Services Directorate, NHS Digital - Powerpoint
- Tom Salmon, Associate Campaign Consultant, Magpie
- Giles Dring, Head of Delivery, Open Innovations (formerly ODILeeds)
Talk 1 - Paul Jennings
The first talk was from Paul Jennings, Analytical Section Head, Data Services Directorate, NHS Digital.
Marc Farr said that it would be interesting to hear about consent and IG for this data as it is clearly sensitive but powerful for research. He also asked who all the data controllers are. Paul Connell asked how people would share potential use cases with NHS Digital?
Paul replied "NHS Digital are the data controller for IAPT and NHS Digital's IAPT publications are available. NHS Digital have a controlled process for accessing data for research purposes, called the Data Access Request Service (DARS). Of course controlling access is critical and our dedicated IG team assess each application through this lens. Our Official Statistics are all aggregated and suppressed to ensure that patient confidentiality is protected. With respect to consent, patient consent is obtained at the point of referral. Patients can of course opt out of the data sharing at any point. The data is from individual IAPT services - these can be very small or quite large. As I very briefly touched on in my slides, these services submit their data to NHS Digital via a secure portal each month, then NHSD process this into a single national extract. Anyone can offer feedback and suggestions to improve our data. We regularly canvass these views through user consultations but at any time you can email firstname.lastname@example.org and mark your message FAO IAPT team. Or else email me directly!"
Kate Croft added "Both IAPT and MHSDS data is submitted to NHS Digital from the providers delivering those services. The page www.digital.nhs.uk/iaptreports has a wealth of information about what and how we publish, but in particular there is a PDF which may give you a helpful overview about how the data is analysed. We don't collect individuals' names in IAPT or MHSDS. We do have preferred language using the ISO 639-1 two character language codes, although the data quality may not be great, and it could only be used as a proxy. The best way to access our public mental health statistics is via our Mental Health Data hub which includes data from IAPT and MHSDS and also our mental health surveys."
Poppy Norley - MH Data Analyst, Kent and Medway CCG - has led IAPT data looking after/analysing their national and local data submissions. Poppy is always happy to help or talk through IAPT data if anyone ever wants a guide email@example.com.
Talk 2 - Kate Croft
Kate Croft, Lead Information Manager, Data Services Directorate, NHS Digital presented a talk on Mental Health Findings from MHSDS. Marc asked Kate whether she had more subtle data, e.g. traveller, Pole, Nigerian etc. Kate replied that ethnicity data is only available at the levels discussed in her presentation.
Nick Garrett commented that he found an interesting aspect about those living in more wealthy areas that the price of housing against incomes means that people with mental health illnesses are in hostels an insecure housing which causes and reinforces mental illness. So a wealthy area with high housing costs relative to income can also have challenges. He's noticed that if the focus is on parents with Adverse Childhood Experiences who live in poor housing and hostels, then SMI incidence can probably be reduced.
Susan Koffler-Sluijterimd added that IMD (Index of Multiple Deprivation) is also broken down into constituents and explained a little in PHE's shape mapping tool and fingertips in the definitions area. Vaccination data is also mapped in the tool allows travel and access comparisons very easily by a variety of transport systems
Talk 3 - Giles Dring & Tom Salmon
Giles Dring, Head of Delivery, Open Innovations (formerly ODILeeds) gave an introduction to a visualisation tool created for Magpie. The data sources for the tool are listed on Github. Giles also mentioned Open Innovations' recent look at data ethics and recommended that people watch Julian Tait's talk from Northernlands3 and sign up to the Declaration for Responsible and Intelligent Data Practice.
During the session Tom Salmon mentioned Covid Explained - a campaign created by Magpie.