You write "COMMENT (NPW): 'Every individual needs to make health decisionsthat meet personal needs as well as the needs of the broader community'.Indeed, and this applies not only to decisions during a pandemic, but to all health decisions. The fact that most people do not have ready access to the healthcare information they need, or are exposed to dangerous misinformation, or both, is an indictment of the chronic dysfunction of the global healthcare information system."
There is some good news about personal information and professional ethics
for sharing medical records in the new UK General Medical Council "decision
making and consent" guidance for doctors - in particular that doctors
should share all of the records with patients except in exceptional
circumstances. I hope that the UN and WHO will support the UK GMC "decision
making and consent" principles in theUN digital strategies (
My understanding of European and UK data processing law is that
doctors are the "Data controllers" of all medical records. As notes become
centralized and hosted by data processors (chosen with the best interfaces
and security such as Amazon for GP records in England) ( ‘processor’ means
a natural or legal person, public authority, agency or other body which
processes personal data on behalf of the controller;)
) guidance such as that of the General Medical Council will be useful
references for how the central database of personal health data should be
controlled. The doctor is no longer the data controller of the life long
national health record but many doctors are - joint data controllers.
1. ‘controller’ means the natural or legal person, public authority,
agency or other body which, alone or jointly with others, determines the
purposes and means of the processing of personal data; where the purposes
and means of such processing are determined by Union or Member State law,
the controller or the specific criteria for its nomination may be provided
for by Union or Member State law;
UK General Medical Council “Guidance on professional standards and ethics
for doctors “Decision making and consent”
COMES INTO EFFECT 9 NOVEMBER 2020
1. This guidance is relevant to every health and care decision that
you make with every patient. This includes decisions about treatments,
procedures, interventions, investigations, screenings, examinations and
2. Decisions about consent to disclosure of information are covered
in our guidance on confidentiality. Decisions about providing innovative
treatments or approaches are covered by this guidance.
3. This guidance applies equally to decisions about mental and
physical health, and in whatever setting your interaction with a patient
takes place, including remote consultations.
4. For patients under 18 this guidance should be read alongside 0–18:
guidance for all doctors.
Principle one All patients have the right to be involved in decisions about
their treatment and care and be supported to make informed decisions if
they are able.
Principle two Decision making is an ongoing process focused on meaningful
dialogue: the exchange of relevant information specific to the individual
Principle three All patients have the right to be listened to, and to be
given the information they need to make a decision and the time and support
they need to understand it.
Principle four Doctors must try to find out what matters to patients so
they can share relevant information about the benefits and harms of
proposed options and reasonable alternatives, including the option to take
Principle five Doctors must start from the presumption that all adult
patients have capacity to make decisions about their treatment and care. A
patient can only be judged to lack capacity to make a specific decision at
a specific time, and only after assessment in line with legal requirements.
Principle six The choice of treatment or care for patients who lack
capacity must be of overall benefit to them, and decisions should be made
in consultation with those who are close to them or advocating for them.
Principle seven Patients whose right to consent is affected by law should
be supported to be involved in the decision-making process, and to exercise
choice if possible.
Exceptional circumstances in which you may decide not to share all relevant
There may be circumstances in which you decide not to share all relevant
information with a patient straight away. If you delay sharing information
necessary for making a decision, you should let the patient know there’s
more to discuss and make sure arrangements are made to share the
information as soon as it’s appropriate to do so. You must make a record of
the information you still need to share, your reasons for not sharing it
now, and when it can be shared.
You should not withhold information a patient needs to make a decision for
any other reason, including if someone close to the patient asks you to. In
very exceptional circumstances you may feel that sharing information with a
patient would cause them serious harm and, if so, it may be appropriate to
withhold it. In this context ‘serious harm’ means more than that the
patient might become upset, decide to refuse treatment, or choose an
alternative. This is a limited exception and you should seek legal advice
if you are considering withholding information from a patient.
HIFA profile: Richard Fitton is a retired family doctor - GP, British Medical Association. 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