1. Involving
Consumers
in
Systema3c
Reviews
Julia
Kreis
Harkness/Bosch
Fellow
Johns
Hopkins
Bloomberg
School
of
Public
Health
Support for this research was provided by The Institute of Medicine and The Commonwealth Fund.
The views presented here are those of the author and should not be attributed to The Institute of
Medicine, The Commonwealth Fund or its respective directors, officers, or staff.

2. Consumer
involvement
is
a
priority
for
Compara-ve
Effec-veness
Research
IOM
Report
on
Ini-al
Na-onal
Priori-es
in
Compara-ve
Effec-veness
Research
(2009):
“the
CER
program
should
fully
involve
consumers,
pa:ents,
and
caregivers
in
key
aspects
of
CER,
including
strategic
planning,
priority
se<ng,
research
proposal
development,
peer
review,
and
dissemina:ons”

3. What
do
we
know
about
consumer
involvement
in
systema-c
reviews?
 How
are
“consumers”
defined
in
the
literature?
 What
is
the
ra-onale
for
involving
consumers
in
health
research?
 What
are
frameworks
to
describe
consumer
involvement
in
health
research?
 How
are
consumers
currently
involved
in
systema-c
reviews?
 Which
issues
deserve
further
aNen-on?

4. How
are
“consumers”
defined
in
the
literature?
Cochrane
Glossary:
“someone
who
uses,
is
affected
by,
or
who
is
en3tled
to
use
a
health-­‐related
service”
CCNet:
“Consumer
in
Cochrane”
=
“an
individual
who
has
unique
personal
experiences
that
allow
him
or
her
to
provide
an
effec-ve
healthcare
user/receiver
perspec-ve
to
a
systema-c
review
ques-on”
A.
Herxheimer:
“informed
pa3ent
who
has
taken
the
trouble
to
learn
about
research
methods
and
can
contribute
insight
and
personal
experience
to
trial
design,
or
even
suggest
new
topics
for
research”

5. What
is
the
ra-onale
for
involving
consumers
in
health
research?
it
improves
the
quality
of
it
is
poli-cally
&
ethically
the
research
product
required
Perspec3ves:
“Consumerism”
“Empowerment”
Increase
consumers’
Enable
consumers
to
greater
sa-sfac-on
with
the
product
autonomy
in
decision
making
Different
status
of
consumers
within
a
research
project.
Different
methods
for
involvement.
Boote
J
et
al.
Consumer
involvement
in
health
research:
a
review
and
research
agenda.
Health
Policy.
2002;
61(2):213-­‐36.

6. What
are
frameworks
to
describe
consumer
involvement
in
health
research?
Consumer
control
“Consumers
designing,
undertaking
and
dissemina-ng
the
results
of
a
research
project”
Increasing
empowerment
Collabora3on
of
consumers
“Ac-ve,
on-­‐going
partnership”
within
the
research
process
Consulta3on
“Asking
consumers
for
their
views
and
using
these
views
to
inform
decision-­‐making”
Boote
J
et
al.
Consumer
involvement
in
health
research:
a
review
and
research
agenda.
Health
Policy.
2002;
61(2):213-­‐36.
Hanley
B
et
al.
Involving
the
Public
in
NHS,
Public
Health
and
Social
Care
Research:
Briefing
Notes
for
Researchers.
Eastleigh:
INVOLVE,
2003

7. How
are
consumers
currently
involved
in
systema-c
reviews?
Interviews
with
key
informants
• of
15
selected
organiza-ons
that
conduct
and/or
commission
systema-c
reviews
• in
the
United
States
• and
Campbell
Collabora-on,
Cochrane
Collabora-on
Preliminary
results
• Few
organiza-ons
of
the
sample
have
an
explicit
policy
to
involve
consumers
• No
common
standard
of
involving
consumers
in
systema-c
reviews
• Different
types
of
involvement:
aim
/
groups
of
consumers
involved
/
methods
of
involvement

8. Possible
aims
of
involving
consumers
in
systema-c
reviews
-­‐
from
the
interviews
-­‐
• Increase
the
relevance
of
the
review
Quality
• Increase
the
accessibility
of
the
review
• Increase
the
acceptance
of
the
review
results
Percep-on
• Increase
the
transparency,
public
trust
and
accountability
of
the
research
process
• Promote
the
evidence-­‐based
approach
Cultural
changes
• Establish
a
culture
of
knowledge-­‐exchange
between
researchers
and
consumers

9. Consulta3on
“Personal
Experience”
Aim:
Ensure
the
relevance
of
the
review:
understand
and
address
the
ques-ons
that
are
relevant
from
the
pa-ents’
perspec-ve
Who:
Pa-ents
with
a
personal
experience
of
the
target
condi-on
Pa-ent
representa-ves
Informal
caregivers,
families
How:
Interviews
or
focus
groups
Review
phase:
Development
of
drai
protocol
Perceived
impact:
Possibly
cri-cal
for
usefulness
Things
to
consider
(raised
by
the
interviewees):
• Representa-veness?
• Pa-ents
or
pa-ent
representa-ves?
• Researchers’
interest
vs.
pa-ents’
interest?

10. Consulta3on
“Public
Comment”
Aim:
Increase
transparency,
public
trust
and
accountability
Who:
The
public
How:
Comment
on
drai
protocol
&
drai
review
via
website
Review
phase:
Drai
protocol
/
drai
review
Perceived
impact:
“Safeguard”
for
excep-onal
cases
Things
to
consider
(raised
by
the
interviewees):
• How
are
comments
handled?

11. Collabora3on
“Stakeholder
Group”
Aim:
Increase
acceptance
of
the
review’s
results
and
of
the
evidence-­‐based
approach
Who:
Stakeholders,
i.e.
pa-ent/consumer
organiza-ons
How:
Stakeholder
advisory
groups
Review
phase:
Discuss
drai
protocol,
drai
review
Perceived
impact:
Helped
to
increase
acceptance
Things
to
consider
(raised
by
the
interviewees):
• Collabora-on
with
stakeholders
vs.
integrity
of
research?
• Person
with
media-ng
skills
between
researchers
and
stakeholders
available?

12. What
do
we
know
about
consumer
involvement
in
systema-c
reviews?

Consumers
are
currently
involved
in
a
variety
of
ways.
 These
reflect
different
ra-onales
for
involving
consumers.

More
evidence
on
the
impact
is
desirable.

13. Which
issues
deserve
further
aNen-on?
Issues
for
CUE
to
discuss
• Level
of
involvement
Which
level
of
involvement
is
preferred
from
a
consumer
perspec-ve?
• Choosing
the
“right”
consumer
organiza3ons
What
if
a
consumer
organiza-on
is
not
dedicated
to
the
principles
of
evidence-­‐based
health
care?
• Individuals
or
representa3ves
Should
consumers
be
involved
as
individuals
or
as
representa-ves
of
a
cons-tuency?

14. Thank
you.
jkreis@jhsph.edu