Data should be used for helping and healing
Healthcare data should ultimately be used for helping & healing others. That was the overall message to data scientists, from the CWC.
At this CWC anchor event in September, three Mental Health Data Scientists described how health data is accessed, handled and used by researchers.
The group discussed important topics including:
- How each health condition has a different code.
- Data privacy and security procedures, including how health records are anonymised.
- What scientists actually see when they look at data on screen.
- The principal of minimisation: When researchers are using routinely collected data (e.g. health records) they can only access the minimum amount of data possible to answer their specific research question (e.g. age in 5 year blocks rather than date of birth, if the research could still take place with that minimised level of detail).
- The richness of data that is collected / available, when explicit consent to take part in research has been given (e.g. Generation Scotland, UK Biobank or SHARE).
- The results from Depression Detectives (a previous online citizen science project), that investigated why people don’t go to the GPs with every case of depression.
Data Islands
Some of the group then designed their own ‘Data Islands’. They started with a totally unprotected island, and were asked to add on details to represent who should be able to access their health data and how.
[Activity adapted from Critical Care Futures / AndThen CC, BY, SA]
“What I want to protect, I get to protect.”
“I can share with who I want to share with”
“Yay for consent! [data used] for helping others”
“I do not fear my data being shared”
“I fear wrong judgement being made by officials with my data”
[they may come to the wrong conclusions]
“Clouds of data which the parts needed can fly to where they need to be.”
“Accessible RAD truths!”
Data Sensitivity – 2 level – fence & password protect
- Red Star – high security
- Yellow star – medium security
- Green star – low security
Data masking for education purposes (green star)
Geography, country, GDPR (red star)
NHS – consent provided (yellow star)
Raw masked data (red and green stars) – released to Third party, with user consent, and after security processes.
Data labs with user consent (red star).
“Individual record of needs, incorporating all of the above – for each individual, birth to death.
- Council,
- Social work
- Education
- Dentist
- Socioeconomic
- Care
[Verbal: all data together is need for a complete picture. Organisatons need to see this to fully
understand and help me. But it shouldn’t be used to do me harm e.g. no access for police]
“Data is compartmentalised. [Lock on each building]
Customs so no-one leaves with something they shouldn’t”
[Data at 3 security levels]
- General information
- Medical Information
- Specific Information
[Verbal: The eye can be closed to shut off access]
“[Data] Clear in the middle, shining.
Arrows coming out for inquiry, consent, exploration and myth”
[verbal: significant challenge to get to the data, but when you get there it is clear.
Several layers of protection and clouds around so people can’t see in.]
“Welcome to anonymous Island!”
Researchers i.e. Data scientists working with clinicians, demographers to understand data)
Passport control – can’t figure out who I am”
Anonymous data can be joined with data from others in the population.
Only anonymous data can leave the island!
Data is checked that it is truly anonymous.
Used to benefit health and society.
I am informed of findings.”
[
[verbal: Data is shared with others who have similar experiences. It can be brought together for certain purposes]
[Verbal: A dense forest surrounds the island and makes it difficult to see/get in.
The path from the locked entrance door is difficult to navigate, and even then, you only get to basic information.
There is more security processes in order to get to general health information.
And even more dense forest surrounding electronic health records (but I can access it all).
Data about my environment is held separately.
More security for leaving the island.
Thank you to everyone who took part and generously allowed us to share their contributions.
This was part of a larger event which also:
- held a public forum about the cuts to the NHS
- a talk on Racism within the NHS
- finished with an open mic in which people shared their views about healthcare.
