Citizens Juries for
Patient Engagement
in Health Care
Kyle Bozentko
Executive Director
@kylebozentko
Who We Are
We’re a nonpartisan nonprofit working to
strengthen democracy by creating and improving
opportunities for folks to participate in civic life
and meaningfully influence the institutions and
policies that shape their lives.
Who We Are
Not
We do not:
● Advocate for particular
issues, specific policies,
or legislation
● Endorse individual
candidates
● Support political parties
Located in Saint Paul,
Minnesota
Our
Mission
The mission of the Jefferson Center is to:
strengthen democracy by advancing
informed, citizen-led solutions to challenging
public issues
Our Vision
We envision a society where individuals interact
genuinely with:
▸
▸
▸
▸
one another
their communities
public institutions
government and elected officials
to address the challenges and issues that affect
their lives.
What We
Do
The Jefferson Center is a civic engagement and public
policy organization specializing in:
▸ building creative partnerships
▸ engage diversity of community to study, discuss,
and recommend solutions to complex issues
▸ work with communities and institutions to
implement solutions
so that individuals can participate meaningfully in
policy development and civic life.
AT THE JEFFERSON
CENTER WE...
Uphold the
standards of the
Citizens Jury
process, serving
as the premier
"certifying"
agent for CJ best
practices and
ensuring the
integrity of the
CJ process
Advocate for the
proliferation of
the CJ process
and explore
settings where
the CJ is the
most effective
and appropriate
deliberative
model to
generate impact
Explore and
Pursue new and
creative
methods and
models for
deliberative
projects that
generate impact
in our core areas
of emphasis
Leverage
collaborations
and
partnerships
to accelerate
project
expansion and
increase the
scope, scale,
and impact of
our initiatives
Core Programs
Climate & Community
Resilience
We aim to serve as a
leader in climate
engagement and
community-led
resilience programs,
with a strong emphasis
on engaging rural
communities
Health & Patient
Engagement Program
We’ve become a leader
and trusted source for
patient engagement
and health policy
development with
current emphases on
patient safety and
patient health records
and data privacy
Democratic Innovation
We continually strive to
develop adaptable,
transportable and scalable
models for media
engagement, voter-led
campaign platforms &
political accountability
Citizen’s Jury Deliberation
A diverse group of a community
▸ Study and gain understanding of complex issues
▸ Deliberate respectfully in a manner than transcends
typical partisan debate
▸ Produce well-considered recommendations based
on solid information.
Elements of a Citizens
Jury
▸ Small group, microcosm of community
▸ Random selection, compensation
▸ Multiple days, sufficient time
▸ General framework of educational information for
analysis and background
▸ Multiple perspectives & approaches for solutions
from “experts”
▸ Combination of dialogue approaches, facilitated
large & small group deliberation, and designbased exercises
▸ Group crafts and generates recommendations and
report materials collectively
▸ Minimize staff/organizational bias
We pool hundreds of
individuals from the
community before creating a
randomly selected,
demographically stratified
group of 18-24.
This deliberative panel serves
as a microcosm of the larger
community. Participants are
compensated to overcome
barriers to participation and
ensure diversity.
We provide the group
with unbiased
background
information and expert
presenters to inform
their deliberative
inquiry.
We facilitate productive,
creative deliberation over
3+ days to give the group
time to understand the
issues and generate
quality recommendations.
The group develops
recommendations to
address climate
change and extreme
weather through
dialogue, deliberation,
and voting.
Questions
about
Citizens
Jury
Process?
Health &
Patient
Engageme
nt
Health Program Strategies
Conduct high-quality
patient engagement
strategies focusing
on organizational and
health-system level
policy development
Specialize in 3-5
policy areas where
patient engagement
and deliberation can
produce improved
health outcomes,
increase patient
satisfaction, and
reduce health
spending for
consumer, providers,
and government
Develop unique
patient engagement
and patient
deliberation
processes that
produce operational,
practical outcomes to
support the delivery
of patient centered
care
Clearing the Error
▸ Diagnostic error is #1 reason for medical malpractice claims in U.S.
▸ Partnered with Syracuse University & Society to Improve Diagnosis in
Medicine (SIDM) to identify strategies to reduce medical diagnostic
error
▸ Most research and strategies for improving diagnostic quality focus
on provider behavior, health systems among providers and health
care staff - not working with the patient or relying on their experience
to guide improvements
Clearing the Error - Our
Process
Clearing the Error Outcomes
▸ 16 patient-generated recommendations for improving diagnostic quality
through patient engagement
▸ Statistically significant improvements in participants’ health literacy and
knowledge, patient activation measure (PAM), trust in doctors,
perceptions about the seriousness of diagnostic error, and perception of
efficacy of patient engagement
▸ Recommendations deemed easy to understand, easy to follow, feasible,
and impactful by other patients
▸ Health professionals gave both positive and negative reviews of the
recommendations developed by patients. However, as compared to
recommendations developed by the Institute of Medicine and another set
of laypeople, they evaluated the deliberative recommendations as being
the most likely to reduce diagnostic error and the most likely to improve
diagnostic quality, and were willing to use the patient recommendations.
Clearing the Error Outcomes
▸ 150+ patients and medical professionals participated in project
▸ Won Research Project of the Year Award from International Association
for Public Participation (IAP2) for engaging public & health care
professionals “with the potential for a big impact on Public Health”
▸ SIDM is using the jury recommendations and citizen assessments to
initiate policy reform in regional healthcare systems
▸ Working with health care systems and other patient safety, insurance
organizations on statewide diagnostic error collaborative in Minnesota
“These results suggest that various kinds of
participatory arrangements, from simple
education, to intensive deliberation, to short
and less intensive feedback sessions, can
have meaningful individual level impacts on
participants. They also demonstrate that the
magnitude of impacts seems to be greatest
for deliberative arrangements, with intensive
forms of deliberation being more impactful
than short and less intensive sessions.”
Patient Activation Measure
(PAM)
1.I am confident that I
can review and
understand results from
diagnostic tests.
2.I can communicate
with my doctor
electronically (via a
computer or smart
phone) about my
healthcare questions,
concerns, or comments.
3.I am willing to ask my
healthcare provider to
wash his or her hands (if
I did not see them do
this) before examining
me.
Changes in Health Literacy
Patient
Data
Privacy
Patient Data Privacy in the
United Kingdom
▸ Wide-scale health record data sharing can improve medical
treatment, but 50% of survey respondents felt their permission was
necessary
▸ The Jefferson Center designed & facilitated 4 Citizens’ Juries to
understand if they would support the sharing of individuals’ medical
data for commercial and research purpose, and if so, under what
conditions working with Citizens’ Juries c.i.c. (our partner)
▸ Partnered with Health e-Research Centre (HeRC), National Institute for
Health Research & Information Commissioner’s office
▸ Results being used by National Health Service and Connected Health
Cities program to plan future health record data sharing program
Patient Data Privacy in the
United Kingdom - Connected
Health Cities
▸ Over 4 days:
▸ 8 witnesses
▸ Group exercises and deliberations
▸ Voted on jury questions
▸ Joint conclusions
▸ Polling
▸ Developed a jury report in situ with facilitator
▸ Same process, facilitators, experts for both Manchester and
York – different jurors
Patient Data Privacy in the
United Kingdom - Connected
Health Cities
▸ 18 per jury, 9 from across each CHC region
▸ Broadly representative mix (2011 census for England):
▹ Age
▹ Gender
▹ Ethnicity
▹ Educational attainment
▹ Geographical spread
▸ Also sampled on prior health record sharing / privacy view
(2015 Wellcome IPSOS MORI survey-1524 adults)
So… why should you
care?
Patient Data Privacy in the
United Kingdom - Connected
Health Cities
▸ Jury events legitimize legitimacy of sponsor decisions
▹
Law: what to do / not to do
▹
But “normative” policy decisions remain
▹
CHC decisions affect citizens
▹
CHC decisions rely on evidence AND values - few organisations
state values (NICE an exception)
▹
Where should those values come from?
▹
Citizens’ juries/councils can inform and justify values and
judgements
Patient Data Privacy in the
United Kingdom - Connected
Health Cities
▸ Citizens juries tell us something different
▹
Surveys and focus groups matter
▹
But policy is complex
▹
▹
Citizens’ juries can tell us what people think when more informed
and able to talk to their peers
People often change their minds…
CHC - Summary of Key
Findings
1.
A majority of people supported all 4 planned CHC uses.
2.
A sizeable minority of jurors did not support the planned use B (frailty) and
planned use D (A&E).
3.
A majority of jurors supported the potential use A (pharmaceuticals) and
potential use B (artificial intelligence), with support for these uses clearly
increasing through the course of the jury.
4.
Only a small minority of jurors were supportive of potential uses C (fitness
tracker app,) and D (fitness club chain), with support clearly decreasing
through the course of the jury.
CHC - Summary of Key
Findings (cont.)
1.
Jurors who voted against planned and potential uses often did so
because they doubted that public benefit would result from the use.
2.
Many jurors changed their view to become more supportive in general
of sharing information for public benefit, even though they may have
become less supportive of specific planned and potential uses
considered.
3.
There were strong similarities between the conclusions reached by the
Manchester and York juries, although some of their reasoning differed.
4.
Signs of bias were reported by a small number of jurors.
THANK YOU!
Any questions?
Contact: [email protected]
Twitter: @kylebozentko