My View: We need to talk about our health data

eHealthNews.nz: Digital Patient

Tuesday, 7 July 2020

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Guest column by Kevin Ross, chief executive of Precision Driven Health

Having lived through phase one of Covid-19, we’ve seen that data matters and timely information saves lives. It’s time to get on with making some changes, argues Kevin Ross.

Recent weeks have exposed the best and worst of healthcare systems, in New Zealand and around the world. We’ve lived through phase one of Covid-19, anxiously awaiting what the next phase may entail. We’ve seen our healthcare leaders lauded for global leadership, then asked for heads to roll as parts of the system are found wanting.

Somewhere buried in the noise was a “once in a generation” health systems review, led by Heather Simpson – the result of wide engagement with our sector. As anticipated, this called for changes to how we organise and deliver health services. The past months have proven that the health sector can adapt fast when it needs to, so let’s get on with some of the changes we need.

Here’s what the review had to say about data:

“People should be more empowered with more trusted access to and control over their health data. Sector stakeholders should be able to more readily share and access health data using newer, nationally consistent approaches, supported by more streamlined procurement. Decision-makers and researchers should have better access to data and digital technologies to support decision making and innovation. This should be enabled through a more centrally-led approach, particularly with regard to standards, data governance, Māori Data Sovereignty and common national systems. Building system-wide digital literacy capability also needs to be accelerated.”

We’ve seen in this pandemic that data matters, and timely information saves lives. It has been reported that the reason we couldn’t answer simple questions about testing in isolation is that two separate systems didn’t have a common identifier, known as the National Health Index, or NHI number. This applies every time we record and transfer information; the NHI is the minimum required information that ensures that we can easily and confidently treat people based on all that we know.

Data relevant to your health is more than your medical record. It includes your unique characteristics, where you’ve been, who you interact with. That isn’t unique to a communicable disease. Studies show that social context drives health outcomes for almost every condition – your whānau and social network shape how you think and behave, as well as providing much of your support. What do we expect our health professionals and health system to know about us?

We need to have a conversation about our data, who gets to see it, and what we would like done with it.

How does health data work today?

In most parts of New Zealand, your GP cannot see whether you collected that prescription, what care you have received elsewhere, or whether others have already ordered tests on your behalf. They have to infer this information; or ask a patient who is prone to forget details when dealing with a health crisis.

If you are transferred for specialist care, the specialist usually receives a letter summarising why you are there, and this often arrives by fax. Ideally, they would be able to view your lifetime health history, but that is often buried in other documents, on systems they cannot access.

As health consumers, most of us cannot see an understandable record of what data is collected about us, and whom has access to it, and data quality is poorest for those who are already disadvantaged. If you have migrated or skipped check-ups and prescriptions because it was too expensive, too far from home, or you couldn’t take the time off work, then we have no record of that illness you suffered. Your doctor and nurse cannot see that you’ve suffered repeat episodes, and your care suffers as a result.

What needs to happen?

“There is a need to provide consumers with easy access to all their own health information allowing them, where appropriate, to manage, update and contribute to their own data and to consent to their data being shared with whānau and caregivers.” (New Zealand Health and Disability System Review – Heather Simpson)

We need to set the expectation that every person can see all of their health information in a way they can understand, share it with whom they choose, and see how it is being used. This will drive consumers to own their own decisions and fight for the right changes, while also driving those who manage IT systems to ensure they are interoperable, connected, and open.

We need to align our systems and incentives to achieve what society values. Acknowledge that there will never be enough money, so we need to be clear how we make trade-offs. For example, increasing the quality and life expectancy for Māori, who live eight years less than the rest of the population, must be higher value than improving outcomes for those who are already advantaged. It is easy to make emotive pleas for help based on individual situations, but a truly effective system must be driven by high quality data and well-reasoned objectives.

We are asking New Zealanders to collect data through initiatives such as the NZ COVID Tracer app and other flu trackers. These are good, but narrow opportunities. The apps we have adopted help an individual to remember where they have been, rather than helping a society to understand its needs. We have seen that Kiwis will make enormous sacrifices for the public good, and are generally open to donation to causes, including organ donation. How do we feel about “donating” data to public causes such as healthcare research or services?

Better data collection and access would make reporting on cases and contact tracing straightforward. But it would also allow us to check whether the people who took a particular medication had different outcomes to those who did not. Or to find all the people who medically qualify for a promising new treatment. Or to tell a patient “for all the people in New Zealand with the same diagnosis as you, here were their outcomes”. Or to make sure that that specialist knows all of your history without you having to repeat it.

There is a lot of work to do to make this work technically, and there are certainly risks to our privacy. We trust our medical professionals and share intimate information with them. We wouldn’t want that information leaked, and wouldn’t want the threat of a leak to stop people from sharing with their trusted clinician either. We worry that this information could cause stigma, influence our ability to get insurance, impact our family or our job prospects. These are legitimate concerns and I believe they are more concerning for health data than most other types. For example, if you leak my financial information then I can change credit cards or passwords; I have some legal protections and even personal records will soon be out of date. But my health data stays with me forever. If I have a family history of heart disease or mental illness, and an employer is influenced by that, then once that data finds its way into the public domain it would be difficult to suppress it.

These risks can be mitigated, but not eliminated. Some say they are so great that we should put barriers in the way of collecting and sharing data. But the cost and risk of that is huge. Asking our health providers to act without good data is like telling someone not to wear glasses because they could get broken. It lowers the quality of care they can offer and allows pre-existing problems to worsen.

We take risks all the time with our data in order to keep up with our news feeds, friends and money. Surely it is worth considering the benefits as well as the risks of a more connected, transparent health record.

This is a conversation we need to have.

Kevin Ross is CEO of Precision Driven Health.

If you want to contact eHealthNews.nz regarding this View, please email the editor Rebecca McBeth.