The use of health care information by agencies and professionals working
within a climate of ethical accountability to patients.
The medical profession has traditionally espoused a commitment to maintaining the
confidentiality of patients’ information such that what is heard or discovered in the
context of a medical consultation or course of management should, in general, not be
disclosed to others where it would be inappropriate to do so. The reading of that
requirement relied on a shared set of sensibilities and a shared morality that united
professional and patient. The climate of health care has now changed but the
traditional commitment still serves as a framing ethos for a health care professional.
In the light of those traditional commitments, certain general principles govern the
ethics of health care information use in a contemporary setting.
1. Autonomy of the patient.
2. A duty of care of the health provider.
The idea of ownership of health information is, as is often remarked, generally
unhelpful and the principles are better understood in terms of rights of access, rights
of control, and responsibilities for the retention and maintenance of medical
information, for instance in patient notes and records, in a manner compatible with the
proper discharge of duties of care.
We can therefore approach the use of health information within this framework.
1. Autonomy
1.1 Patient Autonomy is expressed in the doctrine of informed consent to health
care interventions. The general condition that must be met in relation to medical
information is that a patient is entitled to information about the use of his or her
information that would be likely to affect his or her decision as to whether and
under what conditions to engage in a health care regimen.
1.2 Patient consent to disclose information is therefore an implicit part of a
medical care episode and the privacy legislation requires, as a general principle in
accordance with patient autonomy, that the patient be appraised of the subsequent
uses to which that information be put. The extent of disclosure is a matter of
discussion and can broadly be characterised as falling under the requirements of
informed consent in general which themselves fall within the following ethical
framework:
a) objective assessments of what is reasonable;
b) subjective requirements to meet the needs of the individual patient.
1.3 Reasonable compliance with arrangements to deliver the health care services
being used by the patient can be considered a legitimate aspect of the provision of
any health service and, to meet those service needs, the gathering and disclosure
of information about service delivery and targeting (to agencies who need it) can
therefore fall under this provision.
2. The duty of care.
2.1 The delivery of appropriately targeted health care services requires
adequate documentation of the health care history of the individual
concerned so that mistakes are not made due to ignorance. It is therefore
necessary that some means of collating health care information for any
consumer be part of the regimen of care. The requirement is not subject to
unconstrained patient autonomy because certain safeguards for the
provider are built in to an adequate information gathering and
documentation process so as to protect the provider against the material,
professional, and moral harms of treatment related injury to the patient.
2.2 Material harms arise from expenses incurred by the health care provider
through inadvertent use of less than optimal or even harmful interventions.
2.3 Professional harms arise when issues of competence or negligence arise
through a regimen of care that is inadequately informed.
2.4 Moral harms arise whenever a patient is adversely affected by treatment
even if material or professional issues do not arise.
This general ethical framework translates into concrete recommendations about the
proposed situation that has been brought to my attention by Harbour Health in relation
to primary care delivered within the health care service package funded by Auckland
Health Board.
3. Procedural ethics for health information use.
3.1 Information should be freely available to be used, on a need-to know basis,
by professionals and agencies for the purposes of providing health care
requested by the patient. This covers the use by directly involved health care
professionals and also the use of information in a form required to fulfil any
duties in relation to the delivery and funding of the health care package.
3.2 Patients should know or be notified in some ethically acceptable way of
uses of information that may not be obvious to them or could not be expected
to be part of the awareness of a reasonable New Zealand Health Care
Consumer. On this count most people would be aware that any specially
directed funding would involve the notification of identifying details to
authorizing authorities but the details of information streams consequent on
enrolment with any provider ought to be able to be accessed by any consumer
who wants to know.
3.3 Any person or body who has access to patient data as a result of process
requirements for the data being collected incurs an obligation to respect
patient privacy and the use of information in accordance with the appropriate
privacy rules.
3.4 A professional who communicates with or collaborates in Health Care
Provision with such an organisation or body (such as Testsafe) has obligations
to observe the general requirements already outlined and is entitled to believe
that the other agencies involved are acting ethically.
3.5 The unconsented use of health information by any agency is a violation of
ethical responsibility by that agency and cannot be considered to be a failure
of ethical conduct by other agencies or providers even where they have been
instrumental in supplying the information or facilitating access to it by the
culpable party.
3.6 Partial responsibility for unconsented or unethical use, however, lies with
any professionals or agencies who are or should be aware of the unethical uses
being made and takes no steps to correct the abuse of information or to extract
themselves from the arrangement within which that is occurring.
3.7 These requirements will usually be met by adequate disclosure or publicity
about information use at, or prior to, the time of collection and that
requirement in turn is met by professionals or agencies taking reasonable steps
to acquaint consumers with the reality of their health care provision and the
consequent requirements for information that foreseeably arise from it. In
general, use of non identifying information for statistical or research purposes
does not attract restrictions as a result of privacy requirements and use of
identifiable information does and is subject to explicit consent except where it
properly falls within the arrangements for orderly health care delivery.
3.8 If there exist options relating to information gathering and use in the
context of health care service delivery (such as the possibility of “opting out”
of a register or data bank then these options and the consequences of taking
them should be disclosed when it is reasonable to do so.
3.9 Reasonable disclosure is subject to an objective or “reasonable health care
consumer” standard and the level of disclosure should be varied when a
reasonable health care provider would be led to believe that the consumer
concerned would not find the general or objective provisions acceptable. In
such a case the consequences of refusal to sanction certain information sharing
ought to be disclosed to the patient, and other collaborative service providers
should be warned of their obligations in that special case.
3.10 In practice the “objective” standard results in generally acceptable
provisions for the use and sharing of data that meet the requirements of
consumers, service providers, and funders and individual variations should be
considered as exceptions to the general procedures that should be resorted to
in only the most unusual circumstances. Many apparent problems of this type
will be resolved by a frank discussion of the realities concerned but patients
have a right to have their concerns met and to be satisfied by the answers they
receive before they agree to any given arrangement. (Some, probably most,
will be satisfied by a general notice outlining what is done with test and other
information gathered during the delivery of health care)
In Broad terms most health care providers are entitled to rely on the good faith of the
organisations and health care agencies they deal with and trust that those other parties
in health care delivery have their own processes of governance and ethical
accountability to protect them against the transgression of relevant guidelines and
statutes.
That is not, of course, to say that blind faith is ever warranted particularly when
events occur which would lead a reasonable observer to suspect that the relevant
ethical standards were not being met in some respect or other. In such a case there
will be processes of audit and investigation which a health care provider can invoke
so that the ethical questions can be answered and suspicions can be laid to rest.
Any provider should, as part of the duty of care towards consumers, have
arrangements whereby information relevant to the care provided can be obtained and
accessed in a timely and reasonably practicable manner so as not to undertake health
care service provision under conditions in which it is unsafe to do so. That will
usually mean that, once general conditions on information use have been agreed, a
professional should be able to make routine and unproblematic use of the data access
requirements they need to deliver competent and appropriately directed and funded
health care. That possibility necessarily requires that each agency involved in health
care provision act according to the accepted ethical standards prevalent and
promulgated in the community where care is being provided.
Grant Gillett,
Professor of Medical Ethics,
Dunedin Hospital and Otago Bioethics Centre,
University of Otago Medical School,
Dunedin PO Box 913
New Zealand
4747007-ext 7398
MOBILE 6402102507988