Data Capital podcast: Jason Leitch on using public health data for the wider good
In The Scotsman's latest Data Capital podcast, A Healthy Relationship with Data?, Prof Leitch discusses public attitudes to using their personal health data for the wider good.
He says: "I think that if you stop 100 people in the street and tell them that when they go into hospital, or care home, you would like to send the care home the fact that they are diabetic, or tell the hospital to know that they can't see out of their left eye, most would say ‘Don’t you do that already? Of course you should tell them that!
"What they might not want [sharing] is their sexually transmitted disease history, or their private mental health data. There's a balance in there about who should get what, but in the round, people expect healthcare data to be shared appropriately, confidentially, with other healthcare teams, and we're quite good at that."
He continues: "Data has been crucial to the pandemic response. It's kind of invisible, but it's the foundation for a lot of decision-making.
"At one level, data helps us make individual clinical decisions for Frank and Mary who are ill, or who need to be tested or vaccinated.
"At the other end is data for decisions. So, what does vaccination do for 5 million people? When should you start to do testing with lateral flow devices for 5 million people - or for the return of students? You're giving population level advice, allowing elected officials to make the decisions, and you need data at every level to be able to do that.".
He adds: "Sometimes we forget data is in service. It is not the end in itself, it is in service of patients. I think we have got better at it, but it could be smoother as [healthcare] systems sometimes don't communicate like they should, principally because the systems have developed separately. So we've had parallel tracks of our hospital level data or GP data or dentist data, or optician data, and care home data."
Joanna Boag-Thomson, a Partner in legal firm Shepherd and Wedderburn and another guest on the podcast, says there are definitely lessons to learn about how Scotland has combined health and social care data during the pandemic.
But she stresses that there have been major benefits from the fact that individuals in Scotland have a community health index (CHI) number which stays with them throughout their healthcare journey.
"Access to GP records and hospital records was really important in the initial stages and combining a shielding list of patients to protect the most vulnerable people in society," Boag-Thomson says. .
"And then, in rolling out the vaccines, lists of where to find people and information about their health, has been very important. Although I think that shows one area where there's room for improvement. There did appear to be some issues in actually rolling out the vaccine among sections of the population who don't tend to visit their GP very often."
She believes communication and consultation are crucial to getting data handling right; "They are absolutely key, so that whoever is running a project can understand what the concerns are, think about them, take time to address them and make people feel much more comfortable about understanding what's being done with their personal data."