[Re: Chigozie Michael Nwalozie, Gambia: https://www.hifa.org/dgroups-rss/un-announces-two-new-mechanisms-promote... ]
Michael,
It is possible that we will have an article "Patient access to digital Medical Records - future of healthcare" ready for consideration for editing and publication by the World Medical Journal in time for publication in the December quarterly edition of the journal. Information governance features strongly in the draft article as patients wish to be able to trust the confidentiality of records and AI. Disclosure of personal data carries considerable risks as recognized many years ago:
The Moving Finger writes; and, having writ,
Moves on: nor all thy Piety nor Wit
Shall lure it back to cancel half a Line,
Nor all thy Tears wash out a Word of it.”
― Omar Khayyám 1048 - 1131
In one part of the article(s) we try to highlight the role of autonomy and law in the design of digital health records. Law rightly prevents the sharing of personal health records by service providers beyond their legal provision. Autonomy allows patients who have copies or who have digital access to their records to share the records beyond the legal provision of the service provider. Patient held health records, or patient accessed digital records, have the potential to increase the efficiency, speed, efficacy, and safety of personal healthcare records and of healthcare as a whole, especially for refugees, migrants and travellers beyond national borders.
The last sentence of the eighth right of the first WHO Patient Safety Charter right published in April 2024 declares that: "Disclosure of patient information beyond legislated provisions should occur only with their explicit consent." Clearly, service providers may not share patients' records or information beyond their own contractual requirements." However autonomous patients can:
Medical ethics balances four main principles - beneficence, non- maleficence, autonomy, and justice and these principles of safe and transparent medicine are well expressed in the Institution Medicine's book "Crossing the Quality Chasm".
IOM report: Crossing the Quality Chasm: A new Health System for the twenty first millennium.
The report finds that the current system is unable to provide safe, high quality care in a consistent manner. It consists of 10 rules to redesign the health system and a series of recommendations, including the allocation of $1 billion by Congress to support reform efforts. Crossing the quality Chasm can be read or ordered online at www.nap.edu.
Although it was thought by some that this report would not catch as much attention as the first, it has created quite a splash in the media. Headlines such as "US HealthCare System said lacking" and "IT must BE used to reform US Health System" can be found in both the trade and popular press.
New rules to redesign and improve care
1. "Care based on continuing healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the internet, by telephone, and by other means in addition to face-to-face visits.
2. Customisation based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.
3. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over the health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision-making.
4. Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.
5. Evidence-based decision-making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place.
6. Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors.
7. The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or when choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based-practice, and patient satisfaction.
8. Anticipation of needs. The health system should anticipate patient needs, rather than simply responding to events.
9. Continuous decrease in waste. The health system should not waste resources or patient time.
10. Co-operation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care.
Speaking to a health professional is facilitated by "confidentiality". Confidentiality seals the doctor's lipos from repeating the patients' words and history beyond the contractual service provision. Patients who have copies of their records who can share their access to their records can express their ethical autonomy and share their records beyond the legal provision of their service provider.
The fifth society 5.0 will be grappling with the issues of beneficence, non-maleficence, autonomy and justice as it engages with, and applies, mobile, IT and AI technology to health care.
(WHO Patient Safety Charter right 8 in full:
"Right to access to medical records.
"Patients have the right to access or obtain a copy of their records in a usable and an understandable format. This includes both physical and electronic records that are accurate and up to date. Patients are entitled to request corrections to factual inaccuracies and control the use of their information. A patient may designate a representative to access or obtain their records. Patients also have the right to easily transfer their medical records when seeking second opinions or changing health care facilities. Patients are entitled to expect that their health information is kept secure and that access to this information is restricted to those directly involved in their care. Patients have the right to exercise their data protection rights, including understanding how their data are being used, shared and stored. They are entitled to be informed about any automated decision-making and associated risks involving their data, particularly in the context of telehealth, telecare, and the use of AI in health care. Robust security measures must be put in place to protect patient records from breaches or cyberattacks. Disclosure of patient information beyond legislated provisions should occur only with their explicit consent."
HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data Email address: richardpeterfitton7 AT gmail.com