This is a transcript of an address to the
	Workshop on Privacy of Information and the
	B.C. Pharmacy Network given by John Westwood
	of the British Columbia Civil Liberties Union
	on March 17, 1994 at the Hotel Vancouver.

				-----

First, I would like to thank the Ministry of Health and the College of
Pharmacists for the opportunity to speak with you today about some of the
privacy concerns I have about Pharmanet.

But I also wish to begin by chiding the Ministry and the College for
waiting until such a late date to involve citizens and citizens' groups in
the development process of Pharmanet. This system has been in development
for more than two years now, yet it wasn't until a little over a month ago
that Ministry and industry officials sat down with the BCCLA and FIPA to
explain the system and ask for our input. By then, the system had a full
head of steam: a substantial amount of public money had been spent on its
development, contracts had been let, and all the so-called "stake-holders"
had been consulted and had their say.

In fact, were it not for the BCCLA's having noticed a small article in the
_Vancouver Sun_ last fall, and having written follow-up letters to the
Minister of Health, I suspect that this meeting would not have occurred at
all.

As I look down the list of stake=holders consulted, I notice
Cabinet/Treasury Board, Ministry of Health, College of Pharmacists, College
of Physicians and Surgeons, B.C. Pharmacists Association, and the Coroner's
office.

Who is conspicuous by their absence? Citizens and citizens' groups are not
on this list. I suspect that in the eyes of the government we're not
regarded as "stake-holders".

Well, I beg to differ: this is *our* information that is being discussed,
and *our* careers and personal lives which are potentially at stake. *We*
are the ones who stand to lose if this very sensitive information about us
is inappropriately or inadvertently disclosed. *We* are the ones to
benefit, too, by the savings which we are told are involved, and by being
able to access better advice from pharmacists. Since it is the public's
losses and benefits that are really at stake here, why were we, the public,
not consulted?

It's high time that this government, and governments generally, began to
recognize that citizens' input into public policy is a good and necessary
thing, not something to be feared or avoided or shrugged off as unimportant
or uninformed. We live in a democracy. Citizens are legitimately and
properly demanding more input into government decisions which affect our
lives, and more control over the agenda of public policy.

The BCCLA has several specific concerns about the implementation of
Pharmanet. They are of two basic kinds: (1) the mere existence of such a
sensitive data base, and (2) the forced disclosure of this sensitive
information to pharmacists.

(1) The Mere Existence of This Database
=======================================

It is not primarily the information contained in the Pharmanet database
which concerns us. That information is in fact already "out there", in the
individual records of various pharmacies and pharmacy chains, and this has
been the case for many years.  what is of concern -- I would even say
frightening -- is the compiling of this information into a single data
bank.

I will comment only briefly here about what I think is alarming about the
Pharmanet data bank. In the breakaway session this afternoon, I will go
into somewhat more detail.

First, the compiling of this information in a single data bank makes
accessible what was, for all practical purposes, previously inaccessible --
namely, an individual's complete prescription history. Both lawyers
involved in civil litigation and custody cases and the police will be very
interested in this information.

Second, the risk posed by the inadvertent or inappropriate disclosure of
this information is increased enormously. It is increased in two ways:

(a) a complete prescription history is potentially more damaging to a
person's personal life and career than would be various parts of that
history, and

(b) as the number of users of the system is increased, so too is the
likelihod of leaks in the system. I am aware that Ministry and College
officials are very concerned about leaks, and are doing the best they can
to plug them.  But the fact is, despite their best efforts, leaks are going
to occur, and citizens' lives and careers are going to be damaged.

Do we as a society want to take that risk? Are the benefits of the system
great enough to outweigh it? The Ministry apparently think so, and so too
does the College, the Pharmacists Association, and others.

However, I submit to you that this is not their decision to make. It's our
decision to make. We, the citizens of B.C., are the ones whose personal
lives and careers are at stake, and so it is up to *us* to judge whether or
not we want to accept this risk. Regrettably, we have not been given the
opportunity to make that decision for ourselves through public consultation
and discussion. As a second choice, the BCCLA has asked David Flaherty,
B.C.'s Information and Privacy Commissioner, to conduct a formal
investigation of the Pharmanet system, to determine whether it complies
with the B.C. _Freedom of Information and Protection of Privacy Act_.

(2) Forced Disclosure of Information
====================================

The BCCLA's second major concern about the Pharmanet system is the forced
disclosure of individuals' complete drug history each and every time they
wish a prescription filled.

One of the benchmarks of an information system which respects privacy
principles is consent to the disclosure of personal information. The main
idea is that although the record may be "owned" by an institution, the
*information* on that record is "owned" by the individual to whom it
relates. In principle, it is up to the individual to decide whether or not
the information is disclosed, not up to the institution. If this privacy
principle is to be waived or overridden in particular cases, the necessity
of doing so needs to be demonstrated.

In the present instance, this is not a mere theoretical or philosophical
desideratum. Serious harm could result from the forced disclosure of the
very sensitive information which will be on the data bank. Persons with an
HIV infection, for example, may not wish their local pharmacist to know
that they are taking AZT, and so have their medical condition disclosed.
This could be especially important if the person lives in a smaller
community, and travels to Vancouver for treatment for their HIV infection.
The BCCLA has received a complaint from a woman in a similar situation. She
says she lives in a smaller community, and travels to Vancouver for
treatment of a medical condition. She has her prescription filled in
Vancouver. She alleges that her local pharmacist's daughter-in-law is
involved in filling prescriptions, and she simply doesn't want the
daughter-in-law to know of her condition. Under Pharmanet her only
alternative will be never to have a prescription filled at her local
pharmacy.

Why does the proposed Pharmanet system contain a provision that patients
have no choice -- that they *must* allow the pharmacist access to their
complete prescription history, or be refused service? The proponents of the
system have not supplied compelling reasons. To my knowledge, the savings
which would result from an on-line system such as Pharmanet would not be
affected by allowing the patient to refuse a pharmacist access to this
information. Nor would the ability of pharmacists to discover
contra-indicated prescriptions be compromised. Likely 90 or 95% of the
people in B.C. would give voluntary consent, especially those (such as
seniors) who may have various prescriptions at home, and want to be sure
they're not harming themselves by taking the drugs. Building consent into
the Pharmanet system would not substantially reduce this benefit.

It is with regard to the third announced benefit of Pharmanet -- catching
prescription drug abusers -- that a conflict arises. It is clear that most
drug abusers, or those who wish to sell the drugs on the street, would not
consent to a pharmacist accessing their B.C. prescription histories, if
they were given a choice. Thus, building consent into the system would
reduce, if not completely eliminate, this benefit.

Is this the compelling reason we need to disallow consent? It seems to me
clear that it is not sufficiently compelling. First, there is an
alternative. Since, 1989, B.C. has had in place a triplicate prescription
system for drugs of abuse. This system is neither as foolproof nor as
efficient as Pharmanet is projected to be, but it does get the job done at
a more leisurely pace. Abusers are eventually identified, as are physicians
who are over-prescribing drugs of abuse, and appropriate steps are then
taken.

Second, one might be seduced by the technological advantages of Pharmanet
into thinking that we as a society are thereby addressing the problem of
prescription drug abuse. In fact, this is not so. If such persons cannot
get prescription drugs by multi-doctoring, they will steal whatever is
necessary to get the money to buy drugs such as cocaine and heroin. This is
as much cost to a society, if not a greater cost, than the status quo. Drug
abuse is not going to be solved by reducing the supply. Surely, by now, we
as a society have learned that lesson. I note that a recent press article
quoted the Police Chief of Ottawa, and the Canadian Association of Police
Officers, as calling for the decriminalization of drugs of abuse.

Finally, multi-doctoring and the problem of abuse of prescription drugs is
not primarily the pharmacists' problem, but rather a problem with the
physicians who are over-prescribing such drugs. What is being proposed here
is a system whereby pharmacists are asked to carry out the law enforcement
duties that physicians are not doing adequately. I don't believe that
individual pharmacists are clearly in favour of this, nor am I clear that
individual physicians relish the thought of pharmacists second-guessing the
prescriptions they're writing.

In any case, if this is at bottom a problem to be laid at the feet of
physicians, then that is where it should be dealt with. If physicians are
writing prescriptions for narcotics and other drugs of abuse at the first
visit of a patient, or over-prescribing such drugs, then that is a matter
for the College of Physicians and Surgeons. In my mind, forcing pharmacists
to in effect police physicians is the wrong way to go.

The government and the College of Pharmacists have argued that the bylaws
of the College compel pharmacists to review all the available information
and to advise patients accordingly. I don't find this to be a compelling
argument for non-consensual release of drug histories. First, if the
complete drug history is not available without the patient's consent, and
if the patient refuses consent, the information is simply not available.
This would appear to me to satisfy the College's bylaw. Second, even if the
bylaw is worded in such a way that it does compel the pharmacist to access
patients' records *against* their consent, then it is the bylaw that must
go, not patient consent. You don't override basic civil liberties just
because the law or policy is there. Without compelling reasons, it is the
law or policy that must be overridden, not the principle.

To sum up: I think that the mere existence of this very sensitive database
poses a significant risk of damage to the personal lives and careers of the
citizens of B.C. I think that it is inexcusable that the government and the
College of Pharmacists did not involve citizens at the early development
stages of this process. The Pharmanet project should be halted now, and
citizens given the opportunity to assess for themselves whether the
benefits of the system outweigh its risks. And even if the project goes
ahead, even if the benefits are indeed judged to outweigh the risks, I can
see no compelling reason for mandatory access to the data bank by
pharmacists. Consent must be built into the system.