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School of Population Health and Clinical Practice

Ethics and empirical research:


an exploration of the
relationship between
values and facts
in HTA

Annette Braunack-Mayer
Adelaide Health Technology Assessment
School of Population Health and Clinical
Practice
Outline
Ways of conceptualising the relationship between
ethics and HTA
Values versus Facts
HTAs provide facts; ethics judges facts
Ethical judgments create claims that can be tested
empirically through HTAs

Values and Facts


Ethics contributes to how HTA is defined, implemented
and interpreted, including explicating underpinning
values

Example: FluViews - Enabling effective pandemic influenza


policy through engagement with the community
Ways of conceptualising the relationship between
ethics and HTA

VALUES versus FACTS VALUES and FACTS


1. HTAs provide facts; Ethics contributes to
ethics judges facts how HTAs are defined,
implemented and
2. Ethical judgments interpreted, including
create claims that can explicating underpinning
be tested through HTAs values
FluViews: Using citizens juries for
pandemic influenza planning
University of Adelaide Flinders University
Dr Jackie Street Prof Wendy Rogers
Prof Annette Braunack-Mayer
A/Prof John Moss Health SA
Prof Janet Hiller Dr Ann Koehler
Dr Anne Hayes Ms Heather Petty
Dr Peng Bi Ms Christine Andrews
Ms Laura Gordon & Ms Heather
Englehardt ARC Linkage grant partners
The University of Adelaide
New South Wales Flinders University of SA
Department of Health Health SA
Dr Rod Givney
Aim:

To develop and evaluate a process for


engaging communities in the planned response
to an influenza pandemic
To elucidate community perspectives on the
proposed strategies in pandemic planning
Community engagement using Citizens Juries
Recruitment of 9-12 citizens by market
research company
Jurists provided with evidence-based
information delivered by expert witnesses:
effectiveness
ethical analysis
economic analysis
logistical issues
political analysis
gaps in evidence

Interactive, facilitated
The questions
Jury 1 (Feb, 2008):
How do we allocate scarce resources (antiviral
drugs and vaccine) in a pandemic?

Jury 2 (July, 2008):


Day 1: What is an acceptable framework for
communication in an influenza pandemic?
Day 2: Under what circumstances would isolation,
quarantine, and social distancing measures be
acceptable in an influenza pandemic?
Involvement of government partners
Policy makers sat on the reference group
and were involved with the development
of the juries and review of the findings.
They had limited engagement with the
juries.
Findings from the juries presented to SA
pandemic influenza steering group and
Pandemic Influenza Sub-committee of
the Coalition of Australian Governments
(COAG) but little indication of uptake of
findings.
Some resistance at a number of levels to
the use of citizens juries to examine
these issues.
Ways of conceptualising the relationship between
ethics and HTA

VALUES versus FACTS VALUES and FACTS


1. HTAs provide facts; Ethics contributes to
ethics judges facts how HTAs are defined,
implemented and
2. Ethical judgments interpreted, including
create claims that can explicating underpinning
be tested through HTAs values
Ways of conceptualising the relationship between
ethics and HTA

VALUES versus FACTS


1. HTAs provide facts;
ethics judges facts
Jury 1 Verdict Who should get scarce antiviral
drugs and vaccine in a severe pandemic?

Health care workers (including doctors, 1


nurses, pharmacist, hospital staff)

Viral researchers (producers and 2


researchers of influenza drug production
and development) FACTS
Essential services (water, power, etc) 3/4

Military 3/4
What are the ethical implications of these
findings?
How should we
relate community
views about priority
of access to
government policy?
Ought we to provide
more public
information about
priority of access?
Relationship 1 between ethics and HTA in FluViews

Researchers:
Generate findings (about access to anti-
Facts virals and vaccines)

Policy makers:
Interpret findings and implement policy
Values change
Ways of conceptualising the relationship between
ethics and HTA

VALUES versus FACTS

2. Ethical judgments
create claims that can
be tested through HTAs
Policy makers values about public
consultation
We ought not to communicate too much
information in a pandemic because
It is complex and confusing;
It will frighten
people;
Information
may be misused.
Relationship 2 between ethics and HTA in FluViews

Policy makers:
We ought not to tell the community too much
about pandemic planning because they will
Values misunderstand it, people will overact.

Researchers:
Facts to How does the community respond?
be tested
Summary recommendations from FluViews on
communication in a pandemic
That our society should spend money on communicating pandemic plans
and precautions ...

That communication should be truthful, emphasize the ease with which


PI can spread, the extent of the risk to citizens of all ages and that the
onset may be sudden

That during a pandemic, all information including accurate infection and


mortality rates be made available (not watered down) and that this
information should be relayed by the relevant health authority in
conjunction with high level politicians

That there should be a one stop shop on the internet to provide


pandemic disease information
Rogers, Braunack-Mayer et al Health Expectations, 12, pp.331342
Summary recommendations from FluViews on
communication in a pandemic
That our society should spend money on communicating
pandemic plans and precautions ...

That communication should be truthful, emphasize the ease with


which PI can spread, the extent of the risk to citizens of all ages and that
the onset may be sudden

That during a pandemic, all information including accurate infection


and mortality rates be made available (not watered down) and that
this information should be relayed by the relevant health authority in
conjunction with high level politicians

That there should be a one stop shop on the internet to provide


pandemic disease information
Rogers, Braunack-Mayer et al Health Expectations, 12, pp.331342
Ways of conceptualising the relationship between
ethics and HTA

VALUES and FACTS


Ethics contributes to
how HTAs are defined,
implemented and
interpreted, including
explicating underpinning
values
What did we assume about the relationship
between evidence and ethics in pandemic
planning?
Researchers Our industry partners
assumed... thought...
Pandemic influenza Pandemic influenza
policy and practice are policy and practice is
ethically contentious regarded as just good
science

What counts as an ethical issue was contested here.


What makes an issue an ethical issue?

Contrast pandemic influenza policy making with


organ donation policy making
Values and Facts in FluViews
HTAs provide facts; ethics judges
facts

Ethical judgments create claims that


can be tested empirically in HTAs

Together, HTA and ethics can


interrogate the values, interests and
procedures of pandemic planning, looking
for the ethical messages that are implicit
and taken-for-granted.

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