Privacy regulations are blocking data that could benefit health care in HK

Academics say Hong Kong's Hospital Authority is sitting on a gold mine of data that could be used to improve health services and help save lives, but it often refuses to release information on privacy grounds

PUBLISHED : Tuesday, 05 February, 2013, 12:00am
UPDATED : Tuesday, 05 February, 2013, 9:44am

As Hong Kong offices wound down yesterday at the end of a typically manic Monday, an important deadline passed quietly - unnoticed and unremarked upon by the vast majority of the city's population engrossed in their busy lives and the run-up to the Lunar New Year holiday.

The deadline was for submissions to the Ombudsman's investigation into the public's right and ability to access government information, a process that has potentially huge implications for the people's future right to know about a range of issues.

But, despite being announced with some fanfare last month and triggering a flurry of editorials and commentaries in the city's media, the investigation hardly appears to have set the public imagination alight.

By noon yesterday, less than 20 submissions from organisations and individuals had been received by the Ombudsman's office, a spokeswoman confirmed to the South China Morning Post.

But while the debate over whether Hong Kong should update its 18-year-old Code on Access to Information might seem somewhat ethereal to many, for the director of the University of Hong Kong's Centre for Suicide Research and Prevention, it is a pressing reality.

In an impasse that goes to the heart of the right-to-know debate, Dr Paul Yip Siu-fai has for six months been trying, without success, to persuade the Hospital Authority to release detailed geographical data on cases of attempted suicide.

He wants the data to enable his researchers to build up a profile of areas that are most vulnerable to self-harm and suicide, so that health care resources can then be recommended for those areas.

However, despite assurances that the names and personal details of patients will be safeguarded, Yip has found himself coming up against a one-word brick wall that has frustrated scores of Hong Kong researchers and academics over the years: privacy.

A spokesman for the Hospital Authority said in a statement that Yip's request for geo-coded data on self-harm cases "carries the risks of revealing individuals' identity, thereby breaching the Personal Data (Privacy) Ordinance".

"The Hospital Authority… facilitates and supports academic research and freedom of information. At the same time, it takes stringent precautions to protect patients' personal data in compliance with the Personal Data (Privacy) Ordinance as well as safeguarding patients' rights," the statement said.

In Yip's view, the case highlights the fundamental differences between the attitudes on data gathered by public bodies taken in Hong Kong compared with countries such as Britain, where freedom of information has been significantly enhanced in recent years.

In countries like the UK, they take the attitude that this data belongs to the public and that they should make it available so that people can make use of it. Here, they take the attitude that the data belongs to them

"There is a mindset here which is very, very different to the UK," he said. "In countries like the UK, they take the attitude that this data belongs to the public and that they should make it available so that people can make use of it.

"Here, they take the attitude that the data belongs to them. They give it to you at their own discretion, but they do not fully appreciate that it is public property. It is our money that pays for this data capturing and they simply don't let you have the data."

Yip said the blocking of such information was a barrier to important research and to initiatives aimed at improving health services and ultimately saving lives.

The reason for seeking precise geographical locations of attempted suicide cases in Hong Kong was that problem areas in the city were highly localised, he explained. A single housing area could contain a broad mix of people, making the data on specific locations of self-harm cases extremely valuable to researchers.

"By knowing where the incident took place and where the people were found, we can see whether our services are really matching the need," he said.

"For suicide prevention, there are different levels of intervention. One is at the population level where we look at issues like the unemployment rate, and one is at an individual level where, for example, we look at whether the patient suffers from mental illness.

"But we also look at community resources and how they can be brought in to incorporate them in a suicide prevention programme. If certain blocks have certain cases and there are not sufficient resources, we should redirect those resources to make for more focused intervention.

"In some districts with more problems, you need more resources. We can mitigate the problem by making the environment more conducive for our suicide prevention work or health promotion programmes."

To do so, however, the data held by the Hospital Authority was vital, Yip said. "You have to identify the problems and build a profile. Then you can create a tailor-made programme. But you need the data for the health care planning."

Another major health care initiative that has run into similar privacy issues is a pioneering computerised injury surveillance system (ISS) intended to share detailed information across accident and emergency departments in Hong Kong hospitals.

Retired paediatrician Dr Chow Chun-bong has worked with a team of professionals over the past decade to develop the system aimed at preventing accidents in the home and the community by identifying blackspots and communities at risk and diverting resources accordingly.

The latest version of the system, put into operation at Princess Margaret Hospital in 2008 and at the Caritas Medical Centre and Tseung Kwan O Hospital in 2009, was effective in identifying and developing community intervention programmes, Chow said.

Chow had hoped to see the ISS being used citywide and said that it could be used to map areas of concern and to target services and mobilise relevant NGOs and social services and other government departments.

"Once you identify certain areas where people are at risk, we can follow up and engage the local NGO and communities and relevant bodies," he said. Instead, the ISS is now in retreat and at risk of being phased out, in part because of privacy concerns.

"Until recently the ISS was being used in Tseung Kwan O Hospital and also the Caritas Medical Centre," Chow said. But the hospital will be shutting it down soon. Basically, when we developed the system we were using an old platform, now the system is outdated.

"We planned to migrate to a new system and, of course, that will cost some money. The server will cost about HK$100,000 and the new system will cost about HK$50,000, and then subsequently the hospital will need to maintain it and upgrade it.

"The funding is not really the issue. The hospital is not interested. Although the community in Kwai Tsing is ready to get funds, to find servers and also to change to the new systems, the hospital is not really interested."

Chow said that the Hospital Authority's enthusiasm for the project had waned. Requests to upgrade the system had been rejected and the platform it operated on became out of date.

The data held by hospitals could be of "tremendous use", he said, but when they were asked to release it, they often cited privacy as a reason not to.

Chow argued that it would be simple to put safeguards into the system to prevent identities and exact addresses being revealed and pointed out that similar systems were already used in other countries, such as Britain, to look into the health of children, domestic violence, child abuse, and social-economic backgrounds.

"I don't see privacy as an issue," he said.

"The Hospital Authority has collected a lot of good data and I think it is very important this data is made available.

"The health data held by the Hospital Authority is a gold mine and should be made available for study, provided the studies are being conducted in a scientific and ethical manner with good purpose or objectives. We have a very good record of research ethics in Hong Kong."

Chow said the data could be used not just to target problem areas and plan services but also to look at the social determinants of health and how people's environments could be improved to help them live healthier lives.

"For example if you identify an area where there are a lot of cardiac problems, it is no use telling people in that area they need to exercise if there are no facilities in their neighbourhood where they can exercise," he said.

"Now we understand health is not just medical - the environment is also important, the facilities around people, the support, and even their access to transportation so they can visit family and friends. All these are important, especially for people with mental problems."

Responding to a question about the Hospital Authority's refusal to provide data to Dr Yip, the authority said it had provided data requested by his centre on six occasions in the past, and it was still considering his request for data relating to self-harm cases submitted in July.

"Requests for patient data or information are considered on a cases-by-case basis," the statement said.

"Standard procedures are applicable to all requests from external parties for academic research purpose.

"The required data will be disclosed or released only if all the requirements of our standard procedures, particularly on patient data privacy and ethics approval, are satisfactorily fulfilled."

While Yip's long wait drags on, the Ombudsman's investigation into freedom of information is forging ahead in its own low-key manner, despite the apparent apathy of the public at large.

"We shall look into any present shortcomings of the government and cases of improper handlings," the spokeswoman said.

"We will also conduct some research and draw references from overseas. We expect to complete the investigation within this year."