A private, safety barrier should be established on the Electronic Health Record (eHR) Sharing System to protect individual privacy, the Alliance for Patients' Mutual Help Organization appealed on Thursday.

The alliance reacted strongly to the fact that the government did not set up a safety barrier in the eHR Sharing System, and demanded that a balance be struck between the public service and individual rights.

The Food and Health Bureau contends the eHR Sharing System provides an efficient platform for healthcare providers to upload and access an individual's health related data.

The alliance said all health records comprise the patients' own private information and it is the patient's right to decide whether there should be any disclosure and if so, what should be disclosed.

"The patients we contacted have considerable apprehension about disclosing the whole health file," said Tsang Kin-ping, chairman of the alliance. For instance, a patient afflicted with a genetic disease, may wish his condition to be held private. And it is not necessary that the information be exposed to medical workers, not concerned with that aspect of a patient's file, he added.

"Some patients would rather not join the eHR Sharing System if a disgraceful disease history, such as venereal disease could be accessed without reservation."

The alliance suggested that through the establishment of a barrier, like a safety box, participating individuals could retain all of their health records, or part of them, to avoid disclosure of highly personal information. According to wishes of patients, aspects of personal records may be disclosed to healthcare workers or be withheld as private.

As to highly personal and sensitive material, the initial suggestion covered genetic conditions, including individual genetic information, such as DNA, as well as venereal disease and mental illness.

The alliance also said files pertaining to deceased individuals in the eHR sharing system should be held for six years, in accordance with the Limitation Ordinance, rather than 10 years as suggested by the government.

The alliance said it put forward its suggestions to the government last Saturday and will hold further discussions with government officials about ways to improve eHR.

Joyce Chan, spokeswomen from the Food and Health Bureau said the public consultation about the legal, privacy and security framework for the eHealth record concluded on Feb 11 and the suggestions and proposals received are now being assessed.

The enactment of the eHR Billis expected in mid 2014 and commencement of eHR Sharing System is planned between the middle and the end of 2014.

fanfeifei@chinadailyhk.com

China Daily

(HK Edition 02/17/2012 page1)