That profound and secret mystery
“A wonderful fact to reflect upon, that every human creature is constituted to be that profound secret and mystery to every other.”
Charles Dickens wrote this in A Tale of Two Cities and it’s as true in 2015 as it was in 1859. It’s also a good and compact case for privacy! But sharing information is also part of being human. I’d suggest our ‘profound human mystery’ can only be recognised against the bright backdrop of the information we do share with each other.
We are born and our first smiles and first words are captured and stored by loving parents. Our personalities, as our friends and family know them, are made up of the things we say and do and the information we knowingly or accidentally share about ourselves.
Sharing information is a vital aspect of modern medical care too. It starts with the patient and their doctor, and moves on to an ever-widening net of service providers, electronic record systems and health data repositories. Health information sharing has been increasing for decades and it’s speeding up. Reading the Ministry of Health’s recent consultation document on updating the National Health Strategy gives an thumbnail sketch of where things are now and where they are heading: ‘people-centred, integrated care’. Ultimately that means making a data picture of everyone and using that picture to give them what they need.
This might mean information collected for one set of purposes is used for another set of purposes. It also might mean the health sector information landscape becomes even more complicated and inscrutable. Both these things matter. Purpose and openness are two key pillars of the Privacy Act and the Health Information Privacy Code. We need to stay on top of what's happening with our information if we are to keep control over it in the face of how technology is taking that control away, if we are to keep that precious ‘secret and mystery’ safe.
If the Health Strategy is going to achieve its goals of people-centred and integrated care there are three competing considerations that need to be managed.
The first of these considerations is the ever more fluid answer to the question, ‘what is a health issue?’ New Zealanders seem comfortable with their doctors having health information they need to provide health services. Trouble is it’s becoming harder to draw a bright line around what ‘health services’ might mean, or rather, what it might not mean.
Everything is related. The boundaries between health and social concerns can be very fuzzy. Conditions like cancer, cardiovascular, diabetes, anxiety depression and chronic respiratory disease are all closely connected with social issues like diet, housing and employment. Children’s health and their social wellbeing are closely linked. Even leaky buildings and earthquakes have their associated health problems.
None of this is a surprise to a working GP. Helping patients manage their lifestyle has always been core business. The difference is that government agencies are becoming much more focused on assessing wellbeing holistically, and they would like to use and share data from all over to do that. The way the Ministry talks about a ‘health system’ rather than a ‘health sector’ is illuminating, but also potentially concerning for those who don’t want their confidential information any more widely shared.
The second consideration is patient trust. New Zealand is a high trust environment.
This high level of trust isn’t just a nice thing to have. High trust enables the sort of innovative use of data that the health strategy is aiming for. We need to trust that information about us will be shared by responsible custodians who care about keeping our data safe. If that trust fades, and it can happen fast, it will make it harder for GPs to rely on direct honest communication with their patients to do their jobs well. Nobody likes to think they are being eavesdropped on. We might have accepted electronic tattletales into our lives in the form of apps and smartphones, but we don’t trust our smartphones with our families’ wellbeing.
The third consideration, which is often overlooked, is provider trust. Sharing too much personal information can have consequences for the person concerned, but it can also have serious consequences for the person doing the sharing. There’s a cleft stick that many are caught in, where they’re under pressure to share more and more data about their patients and customers but under even more pressure to not share anything that they shouldn’t.
Faced with these demands it’s not unreasonable for practitioners to draw a line and say ‘no’ to requests for information, at least until they have satisfied themselves that sharing information won’t threaten the trust relationships that they rely on to do their job.
The law will support practitioners who do that; it’s up to the agencies who want patients’ information to convince data custodians that sharing it is both necessary and appropriate. In my experience in this kind of discussion conflict between well-motivated professionals need not be a problem. Any scheme is stronger for having been tested by debate, and if the goal is worthwhile it will still be worthwhile after a difficult journey.
On balance I think if the Ministry and the health sector – or health system – can manage these competing considerations then the potential future described in the draft National Health Strategy update is a good one. In particular using patient portals to make routine transactions like prescription repeats and appointment booking simpler and quicker is an unambiguous positive. GPs have always been trusted custodians of the most sensitive information, and I trust them to keep safe the information that delineates our secret selves.
 92% of surveyed New Zealanders think health service providers are trustworthy in how they protect and use personal information, 2014 UMR survey