The term "patient-centric" is often a buzzword or hot topic in the current discussion of healthcare and digital health. However, putting patients first is easier said than done, especially when clinicians and physicians are often time-crunched, and there are fragmented sources of healthcare data and legal/regulatory concerns when it comes to the management of healthcare data.
A group of panelists representing different perspectives of the healthcare ecosystem gathered last week at the Smarthealth Summit organised by the French Chamber of Commerce in Singapore to tackle the realities and challenges of maintaining the patient-centric approach in data management.
The challenge of data – filling the gap
As a practicing cardiologist at the National Heart Centre of Singapore, Dr Philip Wong observed that one of the real challenges of data is the lack of out-of-hospital data from patients – it is relatively easy to get immediate data or diagnostic data within the hospital setting but that it is insufficient to paint an accurate full picture of one’s health.
“It’s really hard to get any (health) information when one is outside the hospital, the patient only spends five to ten minutes seeing the doctor but the immediate three to four months before seeing the doctor – that whole trend of information is very critical to how we can manage and improve one’s health comes from that data, and that is really missing,” explained Dr Wong.
He added that in the future, sensors such as wearable ECG monitors and data platforms/apps will be very critical in assessing the health of individuals.
Competing interests: Centralised healthcare data base vs Decentralised personal health records
From a legal and regulatory perspective, there are two competing interests when it comes to the management of patients’ data, said Jonathan Kok, Head of Intellectual Property & Technology Practice and Co-Head of Technology Media & Communications Industry Group, Asia, RHTLaw Taylor Wessing.
“One competing interest is a centralised healthcare data base and the other is the control of health records being given back to the patients, which is essentially what EU’s GDPR ruling is about. The intention of the GDPR is to actually give that control over personal data to the individuals, because many technology companies are collecting data and using it for their own agenda and objectives, but not giving the end user individuals the control over it,” Kok elaborated.
There are real benefits to medical practice if all the data is centralised. In Singapore, the National Electronic Health Record (NEHR) was implemented by the Ministry of Health (MOH) in 2011 but that was in a sense a voluntary upload of information. In 2018, MOH wanted to introduce a new bill called the Healthcare Services Bill that would have made it compulsory for private clinics to participate in uploading the medical records of their patients on to this national health record registry system. However, the take-up rate amongst private clinics is less than five percent.
“To achieve a really useful, nationalised system, I do believe the government needs to step in and make it mandatory. If not, there will be real gaps (in medical records), and that will not fulfil the purpose for which it was intended. Therein lies the dilemma – under the Personal Data Protection Act, consent from the individual is very important. And the consent from the individual can only go as far as the purpose for which it was given. Institutions have to then have to make sure that the purpose is well-prescribed, made known and understood by the individual to give their informed consent,” concluded Kok.
Participation at all levels from clinics to hospitals
Celine Le Cotonnec, Chief Data Officer, AXA Singapore spoke about one of the problems she observed in the situation of the Singapore healthcare system from an insurance point of view is the fragmentation of data.
“(Healthcare) data of today is owned by private clinics, government and by the insurers. And to be honest, it costs a lot of money to manage this bad data quality, there is no standardisation, there is no one form for invoice, one form for claims…In Singapore, the increase of healthcare costs is about 15% a year – this is not sustainable and this is why we need technologies to help us in making the healthcare system efficient,” she said.
Kok emphasised that having the right data sets is critical for doctors in hospitals to be able to effectively manage patient care.
“The crux of the matter is that there must be participation at all levels from the private clinics all the way up to the hospitals. Private clinics may have their own systems that’s good enough for their scale of operations but to ask them to move up to a system that interoperates with a larger system involves costs. There’s the whole issue of changing the IT system to be compatible with a nationalised system.
It’s not just about data sharing, it’s also about the security of the data which is an issue and access/control over the data which is another. All these issues need to be considered in implementing a nationwide system.”