Citizens Juries for Patient Engagement in Health Care - PowerPoint Presentation

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Citizens Juries for Patient Engagement in Health Care

Kyle Bozentko

Executive Director

@kylebozentkoSlide2

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.Slide3

Who We Are Not

We do not:

Advocate for particular issues, specific policies, or legislation

Endorse individual candidates

Support political partiesSlide4

Located in Saint Paul, MinnesotaSlide5

Our Mission

The mission of the Jefferson Center is to:

strengthen democracy

by advancing informed, citizen-led solutions to challenging public issuesSlide6

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.Slide7

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.

What We DoSlide8

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

A

T THE

JEFFERSON CENTER

WE

...

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 initiativesSlide9

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 en

gagement,

voter-led campaign platforms

&

political accountabilitySlide10

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.Slide11

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 design-based exercises

Group crafts and generates recommendations and report materials collectively

Minimize staff/organizational biasSlide12

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.Slide13

We provide the group with unbiased background information and expert presenters to inform their deliberative inquiry.Slide14

We facilitate productive, creative deliberation over 3+ days to give the group time to understand the issues and generate quality

recommendations.Slide15

The group develops recommendations to address climate change and extreme weather through dialogue, deliberation, and voting.Slide16

Questions about Citizens Jury Process?Slide17

Health & Patient EngagementSlide18

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 careSlide19

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 improvementsSlide20

Clearing the Error - Our ProcessSlide21
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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.Slide23

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 MinnesotaSlide24

“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.”Slide25

Patient Activation Measure (PAM)Slide26

Changes in Health Literacy

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.Slide27
Slide28

Patient

Data

PrivacySlide29

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 programSlide30

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 jurorsSlide31

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)

Recruited through various sources including Indeed

Paid £100 per day + expensesSlide32

So… why should you care?Slide33

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 judgementsSlide34

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…Slide35

CHC - Summary of Key Findings

A majority of people supported all 4 planned CHC uses.

A sizeable minority of jurors did not support the planned use B (frailty) and planned use D (A&E).

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.

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.Slide36

CHC - Summary of Key Findings (cont.)

Jurors who voted against planned and potential uses often did so because they doubted that public benefit would result from the use.

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.

There were strong similarities between the conclusions reached by the Manchester and York juries, although some of their reasoning differed.

Signs of bias were reported by a small number of jurors.Slide37

THANK YOU!

Any questions?

Contact:

kbozentko@jefferson-center.org

Twitter: @kylebozentko