Not Science Fiction: What Happens When Everyone Owns Standardized Health Data?

When individuals can freely manage their own health data, healthcare systems will become more efficient. The NHS (National Health Service) posits a scenario in which, by 2030, people worldwide can share their health data in standardized formats and engage in real-time information sharing and interaction with research institutions. What would such a future look like? VCBeat (WeChat: vcbeat) has compiled the following insights for you.Some views from Matthew Honeyman, Research Director at The King’s Fund, who focuses on studying how digital technology is transforming healthcare and the field of health policy.

Matthew Honeyman, Research Director at The King’s Fund

It is a day in 2021, and users have logged into the NHS.UL system to modify their account privacy settings.This move means that all NHS staff can view each other's health data records (whereas access for general practitioners is limited)., as the NHS has adopted a unique approach to recording and storing patients' medical data. These data are structured with classified categories and access controls; some are restricted to individual viewing only, while others are specifically designated for research institutions or universities. Clearly, the data will be utilized for future healthcare services and research.

Thanks to the advancements in medical services and the promising prospects of medical research. Many people openEasily Master Your Health Data from the Start, has no objections to sharing their medical data with universities and companies.

During this period, when patients can easily access their medical information through online dashboards, the ease of data sharing has raised significant concerns about data security. Although there is no reliable evidence proving that these data have been misused, a crisis of trust is gradually emerging. Among the most criticized entities online are certain hospitals; although it has not been fully confirmed by the hospitals themselves, some of their sensitive data may have indeed been stolen or decrypted. Additionally, according to a whistleblower, a large amount of NHS data has been used by certain confidential departments without the knowledge of either the NHS or the patients. An independent investigation has been launched, and the Health Secretary has been summoned before a select committee.

The controversy over whether people’s health data are being abused is nothing new. As early as 2016, five years ago, 2.2% of patients opted out of the NHS’s care.data programme becauseThe NHS seeks to leverage the advantage of its rich data resources, attemptingPrecise matching of patient data from general practitioners with that from large hospitals failed.The failure was primarily due to the NHS adopting a relatively arduous approach: writing letters to patients’ general practitioners and registering patients’ objections, even though fewer than 0.25% of patients in the UK chose to share their data with their physicians.

In 2021, it has become much easier to browse, modify, and share health data, and, of course, easier to opt out of this mechanism. New dashboards now allow patients to monitor their data in real time and restrict the NHS’s ability to use their data at any moment. This works much like adjusting privacy settings on a social network.

Amidst the turmoil of data breach crises, one in five users has chosen to stop sharing their health data with non-NHS organizations, while one in ten has opted to completely disable data sharing with the NHS. These trends underscore the trust and confidentiality challenges facing the NHS in its handling of patient data.

This development deals a significant blow to those seeking to leverage these data for research purposes. Research institutions that rely on extensive data collection to investigate the benefits of healthcare and the allocation of medical resources have begun to question whether their findings are rendered obsolete. Researchers dedicated to developing novel therapeutic regimens and pioneering technological advancements in the healthcare industry are growing concerned about whether they have truly constructed accurate patient profiles. As for government officials, their limited understanding of patients hinders the provision of optimal services, potentially increasing the risk that patients will not receive timely and appropriate treatment.

However, this is only one possibility. The future may not be so pessimistic. When people properly manage their own health data, we will have a better healthcare system.

What does an optimistic scenario look like? In the coming years, our definition of “health data” will undergo a significant transformation. Currently, our medical data primarily originates from general practitioners. These data encompass consultations, diagnoses, and treatment plans, and are typically compiled by doctors or NHS personnel starting from birth for most individuals. However, in the future, these data will be more closely linked to patients, enabling cheaper and more widespread data utilization in the digital era.

To realize this vision, the most critical factor is data collection! The NHS can provide wearable sensors, allowing individuals engaged in fitness activities to record their exercise data on demand; apps for tracking mood and symptoms can help people gain genuine insights into their mental health and overall well-being; data captured via video and sensors have renewed the relevance of physicists, alongside genomic data—all of which are linked to the NHS’s unique personal accounts.

Within the NHS data system, the privacy settings employed by individuals can make novel contributions to medical knowledge and high-quality care, as we can allow specific research projects to access our health data. By 2030, it may be possible for everyone to share their health data in a standardized, real-time manner with research initiatives conducted by various types of institutions.

However, the most critical aspect is how to process and analyze these collected data to derive personalized health and medical data.The NHS may develop new big data processing tools (deep artificial intelligence learning) to perform algorithmic analysis of data, and even conduct population-scale predictions and interventions for patients, thereby establishing stable healthcare analytics models. This will help change people’s unhealthy lifestyle habits and enable them to maintain a healthy way of living in the long term.

Of course, we believe that the NHS should always adhere to one principle: it should provide universal and free medical services. For those who are unwilling to share their health data, the NHS should not deprive them of the right to enjoy this benefit. Just as patients who become ill due to engaging in high-risk behaviors should also receive adequate treatment. However, the NHS is different from other free social tools such as Facebook and Twitter; you cannot say that sharing data will definitely allow you to use corresponding NHS services. Therefore, it is even more necessary to maintain trust and clarify the benefits of sharing.

We must not let these data go to waste. Government agencies require high-quality data to deliver better and more equitable healthcare services. Researchers need such data to develop additional treatment options. Charitable organizations, such as The King’s Fund, rely on reliable data to enhance the efficiency of the entire healthcare system. However, even a minor crisis of trust could render all these efforts futile.

Empowering the public to control their own data is the right path, but the entire healthcare system must undergo transformation to ensure these medical data are utilized to their fullest potential. This prevents a scenario where patients, one by one, opt out of data-sharing systems because they fail to see the benefits or lose trust. To prevent data misuse, the system must become more transparent, enabling individuals to clearly understand how their data are used, the processes involved, and the purposes behind such usage. It is crucial to remember that if the healthcare system collapses, there will be no second chance for its reconstruction.