Isabel Alvarez and Simon Rogerson
This paper reviews the Personal Electronic Health Card (PEHC) from a local Portuguese perspective. The ethical and social issues surrounding PEHCs are discussed and global implications summarised.
At the same time that political and sociological conditions are causing a revolution in health care, advance technologies promise to introduce changes even more radical. More recently, pressures to better manage rising costs have generated an intense interest from governments in how the latest computing technologies can assist in cutting health expenses and improve the flow of medical information.
PEHCs are virtual in the sense that they provide a view of data, possibly configured differently at different locations, but united together into a common format for viewing and updating at the required time. In this way, members of health care teams dealing with a patient are able to access relevant elements of the information recorded by his/ her colleagues. They are thus able to obtain a very wide view of the circumstances of an individual’s present and past medical problems, and the health care given to solve them. PEHCs provide a user with virtual access to data possibly scattered around the world. A shared PEHC potentially offers meaningful access to all data for inspection by all authorised users. This can be modified by establishing access barriers which require specific authorisation clearance before protected data subsets can be viewed. This aligns with commonly accepted view that each Health Care Practitioner should only be allowed to access information on a “need-to-know” basis.
Health care providers and payers have long realised the benefits computer-based health cards could provide. In an information age, some of the world’s best medical doctors are still reliant upon paper-based information systems that fail to deliver crucial timely information during the consultation process.
The more we turn our lives over to computers, the more computers represent potentially harmful threats to our lives. There is no doubt that health care plays a critical role in human culture. PEHCs can facilitate the doctor-patient relationship through use of computerised notes which the doctor and patient share and contribute to. However, PEHCs can harm the relationship and undermine trust.
The policy of the Portuguese government has promoted the implementation of a national Personal Electronic Health Card, for each citizen, containing a longitudinal patient record covering the individual complete medical history for his/her whole life. Such strategy raises a number of ethical issues.
It is argued that the PEHC should form the basis for a collaborative environment in which medical doctors, and ultimately the patient, should be able to engage in an interactive electronic discussion. Moreover, by including patients and allowing them not only to access their data, but also to post reports and queries, patients can become better educated and more empowered to manage their own health.
Highly intensive monitoring, collecting and mining of health data at an international level would better support public policy decisions. Additional information derived from such international data mining could be used to more quickly discover and analyse associations between diseases, or to study disease distributions across geographic regions.
The Government states that this electronic card being personal is always in the patient’s possession and that the information therein contained would be only read and updated at the time of visiting a hospital or a private medical centre. In no other situation could it be used. However, it might be difficult for a current patient with a previous unrelated health condition to exercise the right to decide whether or not the medical doctor dealing with the current condition should access information other than what could be related with her present health status.
Although the Government currently guarantees that the use of the PEHC will be restricted, there is the danger that it may become a standard and be required in the common situations in Portugal. These include; when asking for credit at a Bank, where a medical check-up in an insurance company is compulsory, or when entering a new job and a health check-up is asked for, or where the majority of the companies require their employees to do an yearly health check-up concerning present health conditions.
In the past, similar situations have already occurred, with the unique tax number that each citizen has to have. It was initially supposed to be used only for taxing purposes but is now a de facto standard required everywhere in Portugal, by banks, employers, hospitals, telephone companies, electricity, gas and water utilities, and even for the simplest transactions like buying a monthly bus pass. Through this unique number all information can be crossed referenced and checked.
There is clearly a tension and trade-off between the need-to-know and the right to confidentiality which must be addressed. This is an issue which has been exacerbated by computer technologies. Violations of medical confidentiality may appear to be easier because of the efficiency of computerised systems. The damage to the patient whose confidentiality is violated may be proportionately greater because of the amount of data held within the PEHC. Electronic access to medical information requires careful scrutiny. A patient’s right to informed consent should prevail. A patient should have control over her/his data preventing casual distribution that might be harmful. Furthermore, the movement of PEHCs over the computer networks raises concern on the great risk of inaccuracy, falsification, duplication, manipulation and unauthorised distribution.
In general, PEHC use should ideally promote and must certainly not be in conflict with the fundamental medical ethical principles of beneficence (a duty to promote good and act in the best interest of the patient and the health of society), nonmaleficence (a duty to do no harm to patients) and respect for patient autonomy (a duty to protect and foster a patient’s free, uncoerced choices).