Medical data

National Biomedical Data Bank

Main article: National Biomedical Data Bank

2018:13 US medical centers agree to save patient health data on Apple devices

On January 24, 2018, Apple and 13 prominent medical institutions, including the Johns Hopkins American Medical Centers and the University of Pennsylvania, entered into an agreement that will allow Apple to store electronic data on the health of patients in these clinics on their devices - of course, with their consent.

Perhaps this move foreshadows radical changes in the US health care system. It can contribute to the emergence of new revolutionary ways of applying health data and provide patients with unprecedented opportunities.

Over the previous decade, electronic health records have become widespread, but there has been growing public dissatisfaction with the fact that data cannot follow patients through the health system and are not available for closer analysis in order to improve the quality of service and conduct research. Most efforts to remove restrictions on the use and sharing of health data focus on allowing physicians and clinics to share information among themselves. This activity continues, but has not yet led to noticeable success.

Public discontent, however, has increased interest in a new approach to the treatment of medical data: to transfer it to patients and allow them to control their use themselves, that is, to share data with whom they consider it necessary.

Several technology companies, including Google and Microsoft, made similar attempts in the early 2000s, but failed. At that time, electronic medical records were not so widespread, they were used only by a few doctors and hospitals. Medical centers were reluctant to share the available data, considering them valuable confidential information. Technologies that could allow third parties to access electronic records stored in hospitals and in physicians were underdeveloped. E-health record solution providers were not interested in providing third-party access because demand was low and data sharing could play into competitors' hands.

Today, most of these obstacles have disappeared. Electronic health records and digital health data are ubiquitous. Various federal regulations and regulations require health care providers to share data with other providers and patients at risk of high fines. A private initiative group, Argonaut Project, has developed guidelines for a standardized open source software interface (API) that provides free access to information that is stored in the provider's database. This and other APIs are the key to the gates to electronic data warehouses that the healthcare industry is full of. It is noteworthy that now the US federal government requires all electronic record providers to include open source APIs in products subject to state certification.

In a world where patients have free access to their own electronic data through the mediation of companies like Apple, there will be incredible opportunities to improve the health system and people's health. First, the availability of data needed by patients for further treatment will no longer depend on the bureaucracy of large medical centers or clinics where there are not enough staff. This can improve the quality of service and reduce the cost of repeated and optional examinations.

Second, removing restrictions on patient data will allow third parties to use them (with patient consent) to provide new useful services that will help patients better monitor their own health and manage their treatment. Such client-oriented applications - if intuitive, practical, and accurate - can potentially revolutionize the interaction of patients and healthcare providers and provide them with unprecedented opportunities in the history of medicine. Imagine a digital medical consultant similar to Yandex.Alice, who can answer consumer questions based on his health data analyzed by artificial intelligence. The health industry can begin to function as traditional economic markets.

However, there are obstacles and difficulties to this future.

Firstly, a large number of hospitals and doctors will have to follow the example of 13 medical centers that have joined the agreement. We see encouraging signs that many will, but for health care providers and their IT partners to invest in these new partnerships, they need to have a clear economic rationale. Perhaps the most convincing incentive could be high consumer demand. But for it to arise, in exchange for providing access to its data to third parties, like Apple, consumers must get something valuable. This means that Apple and its future competitors will have to develop attractive customer-oriented applications that can easily and cheaply solve patient problems. For 2018, such applications simply do not exist.

Second, free access to data offers frightening opportunities for fraud and misuse of confidential information. Most consumers will want to transfer the responsibility for the use, storage, management and analysis of their data to third parties. It is important to make sure that they are trustworthy, otherwise unscrupulous companies will sooner or later take advantage of the inexperience of patients. Health data is highly valued in the black market, and even honest but inexperienced operators can create huge problems if they do not protect information properly. Public and private organizations are working on a voluntary but legally binding code of conduct that could regulate the actions of database operators. Its introduction will be the first step towards protecting patients from fraudsters.

Third, once more companies start developing medical applications for patients based on their health data, the quality of these programs may arise. By providing advice, they must guarantee their reliability. By promising certain services, they must provide them. Some apps may fall under the control of existing regulators, such as the Food and Drug Administration or the Federal Trade Commission. Otherwise, the question of how to ensure the correctness and reliability of the advice that consumers receive will inevitably arise at the government level.

Despite these challenges, the announcement of collaboration between America's leading providers of health and technology services signals a new era in health and medicine. This partnership will not solve all problems, but will expand the US health care system. And this shake-up is absolutely necessary for her^[1].

Notes