Without Incentives, Health Data Sharing Systems Don’t Work for Patients
Asian governments should compel all public and private health service providers to share their data, promote continuity of care, and put their patients’ wellbeing first.
In the multi-payer systems that characterize primary health care in Asia and the Pacific, both developed and developing countries suffer a way of delivering care that works against data sharing.
Even in Hong Kong, China—which has one of the highest standards of health care in the region—services are rendered without a sharable electronic medical records system, as I witnessed in a recent encounter with the medical profession that gave me first-hand insight into the matter.
Like 70% of Hong Kong’s population, I get my primary health care in the private sector. After a recent well-woman check-up with my family doctor, she sent me to a specialist, with a printed letter and photocopies of my test results. The specialist subsequently typed up and posted back his reply, explaining his diagnosis and course of action. Now both doctors had the same sheets of paper in my medical records. Meanwhile, the specialist my doctor recommended was not the same one who had provided my obstetric care, as well as periodic check-ups, over the past 17 years.
Now there were three doctors, with consulting rooms within walking distance of each other, all of who know me, and had important information about my reproductive health (and illness)… and no formal way to share the data with each other.
So I shared the data myself – I delivered the referral specialist’s handwritten notes to my longstanding gynecological care provider so he could put them in his paper records. This is what happens in Hong Kong’s private medical sector, which delivers the most expensive—and arguably the most patient-centric—primary care in the territory. The only reason all three of these doctors are now up to speed on my health is because I took it upon myself to make that happen. This is not a typical way that patients in Hong Kong deal with their health records, if they even see them at all. Usually this data is simply not shared with them or anyone else because there is no mechanism for that to happen.
Had I been part of the minority who access primary care at a Hospital Authority (HA) outpatient facility, every encounter with any health worker would have been logged in the HA’s excellent electronic medical records system. My health data would be available for easy retrieval at any point in the future. What the HA’s system can’t do, though, is tap into private sector medical records, where the vast majority of primary care happens in Hong Kong.
In March 2016 the Hong Kong, China government launched its Electronic Health Record Sharing System. It didn’t seem to create much of a splash, so I was intrigued. There is a system for data sharing after all. But leaving aside the baffling instructions for patient registration, there is another major constraint – I can register as a patient, but there is no mechanism for me to check whether or not any of my private providers have signed up, and even participating providers may not be able to share all the data they have due to “technical constraints and readiness.”
When I asked my providers, one specialist supported the idea of patient data sharing and praised the HA system, but complained the registration process was onerous and the perceived benefit to him and his patients was minimal.
Hong Kong, China is a multi-provider, multi-payer health care environment where public hospitals compete with private primary and specialist care providers. There is thus a strong disincentive for the sectors to share patient data they consider to be their proprietary information. This lack of data sharing is one key reason why Hong Kong’s primary care financing model is poor value for money.
Patients are not in a position to drive the creation of a central medical records database. Public trust in the Hong Kong government, currently at its lowest level since the 2003 SARS outbreak, also undermines efforts to reassure patients that their data will be kept safe and confidential. Moreover, the government’s data sharing system only offers a (somewhat clunky) mechanism for sharing data, but does nothing to address the disincentives to sharing it.
A robust, genuinely population-wide medical data sharing system with strong and transparent governance helps identify patients uniquely and confidentially whenever and wherever they access health care. Providers can access the information they need–and only that information–to provide continuity of care. This has enormous positive implications for public health, and other Asian countries should be aware of this.
The problem can only be effectively addressed by government intervention that compels all public and private health service providers to share their data, promote continuity of care, and put their patients’ wellbeing first.