Theme: Communal costs of privacy. Patient's right to leave access to his patient record open. There has been no empirical study on the costs of impaired access.
Benefits of Telemedicine: one inadvertent benefit is that you cannot leave out information in a consultation as you would with information that is put into the patient record at sole discretion of health care provider. Patient consent, encryption of information, and physical access to information using key devices (e.g., smart cards, bio-identifier).
Continuum
Authors: Colin Bennett, Robert Gellman, Nigel Waters and Charles Raab. It tests a methodology for assessing 'adequacy' in 30 case studies of transfers of data to six countries (including the USA), and draws conclusions about adequacy and about the methodology itself. Case studies include Medical/Epidemiological data.
Recommendations:
2.1 Health Canada, in partnership with provincial and territorial
ministries of health, should recognize in its funding
decisions for a health infostructure that health information is
an essential public good which should be readily
available and accessible to all Canadians as a component of
Canada's publicly funded health system.
2.2 To understand better the information needs of the public,
strengthen people's ability to access and use evidence-based
information, and provide mechanisms for public access to reliable
health information, Health Canada should:
(a) undertake, in partnership with other levels of government and
health stakeholders, an investigation of the health information
needs of the general public, using a variety of culturally and
linguistically appropriate, interactive and ongoing strategies;
(b) promote, in partnership with other federal departments and
agencies (e.g. the Canada Institute for Scientific and Technical
Information) and provincial and territorial departments and
agencies, the ability of Canadians to access and use
evidence-based, non-identifiable health information to meet their
health information needs and concerns by establishing a fund
that will support demonstration projects; [This is as close as I
could get to the model promoted by Jim Henderson. Others,
however, may read it in a different way. I understand that the
incorporation of clinical health informtics is becoming a big deal
in many health districts so the folks designing these systems
maybe a group with which to form an alliance. Also, Alan
Nymark reported that the issue of evidence-based decision
making was very prominent in the discussions of the Health
Accord, the Social Contract and the forthcoming federal budget.
The provincial health departments, OTOH, are apparently not
fully up to speed on the concepts embedded within the idea of
a health infoway.]
(c) establish a fund to allow consumer and health intermediaries
to develop and provide access to consumer health
information; and
(d) support the Canadian Health Network as one mechanism for
providing Canadians with access to reliable health
information.
2.3 Health Canada, in partnership with provincial and territorial health
ministries, should take the lead to:
(a) ensure that standards/benchmarks/guidelines are developed
and implemented to allow the general public to distinguish
objective, empirically based health information from
information intended to promote a product; and
(b) expand these standards/benchmarks/guidelines eventually to
include rating criteria for websites providing health
information.
2.5 Health Canada should work with other federal departments and
agencies and specialists in the field to encourage development
of:
(a) an Internet search capability which is specific to health and,
at a minimum, fully and equally meets the needs of
Canada's English- and French-speaking communities; and
(b) Internet content on health in French and English.
2.6 Health Canada, in partnership with representatives of user
communities such as the Canadian Association of Public Data
Users, should take the lead in approaching Treasury Board and
other federal departments and agencies to review the policies
and practices with respect to cost recovery and revenue
generation governing the availability and redistribution of publicly
funded collections, statistical databases and other government
information relevant to health.
2.7 Investments in the digital networking of the Canada Health
Infoway should be balanced by appropriate investments in the
other (i.e. non-electronic) mechanisms for sharing information
that can lead to improved health.
2.8 To ensure that health information is accessible on a universal,
equitable and affordable basis, it is vital that:
(a) the federal government continue to ensure universal, equitable
and affordable access to existing and future basic
telecommunications infrastructure; and
(b) Health Canada, in partnership with provincial and territorial
ministries of health, take a leadership role in ensuring
that health information and health care applications for the general
public are developed in such a way as to be accessible to all
citizens, irrespective of their geographic location, income,
language, disability, gender, age, cultural background or level of
traditional or digital literacy.
2.9 Health Canada, in partnership with other federal departments,
provinces and territories, and health stakeholders,
should:
(a) ensure establishment of a "Canada Health Space" as a
universally accessible health information/communications
commons;
(b) capitalize on and support the nation-wide networking of health
intermediaries;
(c) ensure adequate funding and technical support to health
intermediaries to develop and/or maintain their capacity to
provide the general public with timely, credible and
"understandable" health information and to assist in
overcoming access barriers; and
(d) accept, as a normal budgeted cost of doing business
electronically, the need to sustain health intermediaries and
support them for providing affordable electronic health
information services to disseminate health promotion, health
protection and other kinds of health information to wider
publics, just as such costs have been accepted in the
paper-based world in the past.
2.10 Health Canada, in partnership with provincial and territorial
ministries of health, should work closely with Industry
Canada to ensure that all public and not-for-profit health care
institutions in Canada are aware of:
(a) the Community Access Program; and
(b) how they can apply for resources to locate public electronic
access facilities on or near their premises to help ensure that
their clients can use on-line health information.
2.11 As a means of ensuring more equitable access to health
information and health care services, Health Canada, in
partnership with provincial and territorial health ministries, should
work closely with the Canadian Network for the Advancement of
Research, Industry and Education, and Industry Canada to
investigate the further integration of new technologies, including
satellite technologies, into health networks at all levels.
2.12 Health Canada should establish a non-governmental office of
citizen health advocacy to coordinate and facilitate input and
participation by the general public into health policy deliberations,
including policies relating to the Canada Health Infoway. This
office would:
(a) coordinate and facilitate the linking of community-based
voluntary health organizations and health consumer
organizations to enable or enhance their capacity to
participate effectively in health and public policy development;
and
(b) constitute an ongoing, stable mechanism for obtaining reliable
and representative input and feedback from the health
consumer sector.
Key words: Ethics, information, technology, privacy, confidentiality,
data linkage, decision support, telemedicine.
p. 5 "This paper will review the spectrum of information technologies
with potential in health and health care, present some lessons learned from
physician experience with these technologies and initiate a reflection on
some of the underlying ethical issues which must be addressed to ensure
that these technologies achieve their potential for good in health care."
p. 10 "Password protections, which are easily available in existing technologies,
and identify individuals with approved access to personal health information.
The levels of privacy protection and security of access supported by new
technologies exceed those which are present with paper records where departments
cannot provide inforamion about who has accessed a particular health record.
Smart card technology provides differential access to data. The ability
to sort and retrieve useful health information provides a longitudinal record
and can provide prompts issues to be addressed in follow-up. Health care
has been slower than banks or business to adopt many of the new and now
familiar information technologies; this may cause harm to patients because
of the difficulties doctors and patients have in accessing the best information
in the right place at the right time.
Data Sharing, Data Mining and Data Linkage: Data sharing using
information systems allows information to be developed from multiple sources
as seen in genetic information banks sharing information to identify the
genes for breast cancer. Data linkage occurs when information about a particular
individual which is collected and maintained in separate locations is accessible
with a common key so that those with access to one set of information, have
access to both. ....Data mining utilizes artificial intelligence algorithms
and database to discover patterns. Data mining methods can discover relationships
between demographic characteristics, health care activities, and the results
of health care activities to produce new knowledge. Data mining techniques
do not necessarily produce information about individual patients, but rather
knowledge about particular characteristics which are associated with each
other. Health care workers spend substantial effort in the collection of
individual patient informatio n but little effort has been dedicated to
learning how to 'extract gold from the informational ore'. The private sector
techniques learning about patterns of behavior can be used to learn about
paterns of illness, including risk factors for populations and the characteristics
of patients which make particular interventions more likely to succeed or
fail.
Some Ethical Issues Requiring Physician Reflection: Obligation to Provide
the Best Care: p. 14. Respect for patients is a fundamental tenet of
good practice. Respecting the privacy of individuals and maintaining confidentiality
are essential for that trust which is central to the patient-physician encounter.
Privacy is the right to keep personal information to oneself and to be protected
from invasion of that privacy. Private information is shared with the physician
in every encounter for the purpose of care. If privacy is held too high,
the price is non-disclosure of pertinent information which could be used
to solve a problem. The price of excessive protection of privacy may be
an increase in the cost of obtaining pertinent informatio and the occasional
failure to find necessary information.
Confidentiality is respect for the information shared by an individual
with a clinician for the specific purpose of health goals. Confidentiality
requires a new definition which protects that trust which is so essential
to health care but which recognizes the web of expertise necessary for diagnosis,
treatment, reimbursement of care and the generation of new information.
For communities, the price of protecting confidentiality is an increase
in the cost of collecting and aggregating information which is required
for decision support. Standards for protecting privacy and confidentiality
in information systems should not be considered separate from the standards
set for the traditional paper chart information."
Decisional Support:p. 17 This technology can also provide invaluable
assistance in dealing with the unmanageable volume of medical literatuer
and advancing 'evidence-based' medicine. Inappropriate practice variation
could be identified and dealt with more effectively if policies and infrastructure
for the collection of evidence and the establishment and promulgation of
practice guidelines were established. The failure to implement proper decision
support tools for clinical care can be adversely effecting patients by contributing
to use of outdated information in care decisions. The duty to 'do no harm'
surely requires the best information available to be made available to the
individual clinical encounter.
Data Linkage: The new technologies have the power to link health
information, shared for a specific health purpose, with other personal information
with or without the knowledge of the individual. These possibilities present
challenges to traditional understanding of privacy in North America. It
has been suggested "that most people are not opposed to giving information
about themselves as long as they get something in return". In health, the
returns for sharing private information about oneself are opportunities
for appropriate care. There is also the opportunity to participate as part
of an aggregate to produce new knowledge which is potentially beneficial
to the individual as well as to the larger community of patients.
...Effective and efficient use of these technologies will require communities
to clearly articulate policies related to privacy, confidentiality and the
appropriate linkage of information collected for one purpose to other webs
of information. Because of this power of information technologies to link
together medical and non-medical information regarding patients, families
and communities, a broader understanding of health is possible. The social
and economic determinants of health can be more readily demonstrated. The
importance of population health, effective disease prevention and long-term
care burdens can be readily identified. Physicians will need to respond
to these areas and become effective advocates for resources.
Summary:....Technologies exist which can improve the care for large
numbers of patients, but communities have not invested in them. The tragic
result is that many patients suffer preventable adverse reactions. It is
essential that communities and the health care industry discuss ethical
and policy issues related to the use of technology in order to facilitate
rapid implementation of useful tools to support clinical care, health care
administration, research and teaching. To be able to improve the care of
patients and not to do so is a fundamental breach of physician duty.
Other notable security alternatives include Data Encryption Standard (DES) and the Clipper Chip (policy versions I, II and III), designed by the U.S. National Security Agency (NSA).
Excerpts from: Considerations of the Legal, Ethical and Organizational aspects of the practice of medicine, dated 10/02/98.
Physicians receive confidential information from and regarding their patients, which they are bound not to disclose. This obligation is the foundation of confidence in the doctor patient relationship. The physician is obliged to recognize the legitimate interests and rights of third parties to patient information, and to disclose this information in an ethical fashion. Electronic communication technology increases the risk of disclosure of confidential information. Candidates will need to be aware of evolving standards and precautions in this regard.
Detailed objectives
Rationale The right to security of the person / inviolability mean that it is legally (and ethically) mandatory that the physician obtain the consent of his/her patient (or in the case of the incompetent patient, the patient's lawful substitute) for any medical investigation, treatment, or research. This consent must be voluntarily given and fully informed, and may be expressed or implied and given orally or in writing according to the circumstances. Consent may be lawfully withheld, and this decision must be respected. The law provides for a limited number of exceptions to the requirement for consent.
Detailed objectives
The competent candidate will be able to demonstrate an understanding that:
Rationale Physicians are legally (and ethically) bound to hold any and all information obtained from a patient confidential. This duty ensures that the patient's legal rights (including to reputation and social status) are protected. Confidentiality is of course also recognized as essential for physician-patient respect and trust. Exceptions arise when the patient waives the right to confidentiality or when provided for in law.
Detailed objectives The competent candidate will be able to recognize and apply the following principles in the clinical situation:
Updated Feb 8, 1999. Return to Top of Page
|
|
|
|
|
|
|
|
|
|
|
|
This page last updated May 6, 1999. Please send comments to Grace Paterson, Medical Informatics, Dalhousie University, Halifax, N.S. B3H 4H7