Today I spoke at Belgium’s national conference, organised by the Federal Public Service. I was the second speaker in the first session, titled Giving direct access to medical data to the patient: What difference does it make?
Sweden and England are the first two European countries to have decided to guarantee through legal provisions a direct access to the Electronic Health Record for the patient. The two main projects which have contributed to this decision will come and explain us what has been their initial thoughts and what have been the crucial elements which convinced their governments.In Belgium, this question has also begun to be discussed inside a certain number of fora and in particular within the Regional Health Networks in full deployement. Even though the right of direct access to the EHR has not been granted, a number of fundamental rights have however already been granted to the patient. Two Belgian Regional Health networks will come to share their experience on the topic. The roundtable which will follow those presentations will gather representatives of GPs and patients and will try to answer this question: “Is Belgium ready to follow the path chosen by Sweden and England?
The first speaker, Dr Benny Eklund, Manager of e-Government at Sweden’s County Council of Uppsala, gave a fascinating talk. His start was the same as mine, but the conclusions he drew by the end were opposite.
At the beginning of his talk he told two stories that showed how health care fails to take advantage of processes from other industries. He ordered something from the USA. This was sent to him via FedEx, and he was given a tracking number. With great interest he watched the path of the package, traveling between distribution hubs rather than directly to Sweden. When it arrived in Sweden, he noticed the package get stuck at certain points. When it did, he would call, find out the problem, fix it, and the package would continue to make its way. Over a week, the “next-day” package arrived at his home.
He asked himself why FedEx had given him a tracking number. The reason, he understood, was that FedEx was using him to get free quality control. He was fixing errors in the passage of the package.
By contrast that month, a taxi driver called him angrily to say that his mother was outside Benny’s house, but without a key. His mother had been discharged from hospital, without Benny’s knowledge, and sent home in a taxi during work hours, meaning he would not be there to welcome her and look after her. The tragedy is that the hospital is 10 minutes away from his office. If they had told him, he would of course have picked her up. But it was easier for him to track a package across thousands of miles than to know what was happening to his mother in the hospital next door.
In a beautifully Swedish way, pragmatic and understated, he described his county council’s efforts at sharing records to improve patient care. Eventually of course, this included sharing data about the patient with the patient. But to do so required a change in Swedish law. Because Swedish legislation required that anyone accessing a patient’s record be registered at an organisation with a data controller. But since a patient was not part of an organisation, they were the only person for whom it was illegal to access the record. Eventually this wrong was righted of course. Let us not forget that it was Sweden who had invented the freedom of information act all the way back in 1766.
By the end though I was disappointed at where the team’s progressive approach was heading. To improve patient safety, they began sharing records between GP surgeries in Uppsala. Most citizens would agree to this, wanting their family doctors to be able to look after them in times of need. Then this was expanded to hospital staff. Then emergency staff. Then ancillary staff. On and on, the list expanded. Under the current rules, he explained, rolling out the system across Sweden would mean that 1 in every 30 people would have access to the medical records of all 30 people.
This is wrong. Furthermore, it is unnecessary. The intention is good, but the architecture is primitive, relying on central definitions of who should access everyone’s records. But different people have different preferences, and different combinations of professionals who they trust. For professionals and those in governments, increasingly difficult contortions are necessary in deciding whether a particular class of professional has sufficient support across the population to be granted access.
None of this is necessary. The technology already exists for each citizen to indicate who they want to access their records at which time. Patient-controlled records are already here, they already work, and they increase safety by empowering the patient to join up the health care system. This is the principle on which we built Patients Know Best.