# Presentation: 025541

## Update on the Public Engagement Pilot Project on Pandemic Influenza (PEP2Flu) 

**Roger Bernier, PhD, MPH**
**Presentation at the Joint NVAC/ACIP Workgroup Meeting**
**Washington, DC**
**April 20, 2005**

## 3 Purposes Today

- 1. Describe public participation
- 2. Describe the benefits of public participation
- 3. Describe a model for engaging the public and a pilot project applying the model on pandemic influenza

## Definition of Public Participation

**Public participation is engaging openly and respectfully in “give and take” discussions with citizens and/or stakeholders about an impending decision or action.**

## The Key: Understanding The Levels of Public Participation

- Involve

- Collaborate

- Consult

- Empower

**The Key: Understanding The Levels of Public Participation**

**4**

**5**

## What Public Participation Is Not

**It’s NOT:**
**Health education or communication**
- 		*one way transfer of information*
**Marketing**
*selling a product *
**Public relations**
- 		*selling a policy position*
*	*

## Why Engage The Publics?

- 3 Rationales—Normative, Substantive, and Instrumental
- _Right Thing_ To Do—More fulfilling, More self-efficacy for participants
- _Best Thing_ To Do—Substantively Better Decisions, More Health Impact
- _Useful Thing_ To Do—More Buy-In, More Social Capital

## Why Engage The Publics?

- You need their help
- You need their advice
- You need their buy-in
- From Peter Sandman, “Pandemic Influenza Risk Communication: The Teachable Moment”

## Why Engage the Public? 

- Sweden’s new national public health policy
- First ever based on social determinants of health, not on disease specific goals
- First goal out of 11—Participation and influence in society
- “Increasing people’s level of participation in society life is...one of the most important national public health objectives.”

## Public Engagement Is A Health Intervention

- By creating opportunities for participants to have more say or control over their lives and be more fulfilled  (increased self-efficacy), by creating sounder decisions, and by creating more buy-in for health decisions, public engagement is a health intervention
- Also, done right, public engagement builds trust and increases social capital

## Public Engagement Can Also Be A Health Hazard

**As an intervention with consequences, we need to consider the safety of public engagement**
**Done poorly, public engagement creates adverse effects resulting in decreased self efficacy, unsound advice, decreased buy-in for public health decisions, and loss of trust, and thereby permits more illness to occur.**

## Agency “Safety” Or “Readiness” Test—First Do No Harm

- Do we share the values?
- Do we have a decision to share?
- Do we have clear objectives?
- Do we have commitments from decision makers? Funds, staff, a promise to consider the results seriously and give feedback on the decision taken
- Do we have a model to use?
- Do we have the skills to implement?

## Wingspread Public Engagement Planning Group

- Ad hoc group—no official standing
- Carried out as part of a special sabbatical-type assignment from 2001-2003
- To explore public engagement as a means of building trust initially then more broadly as a means of informing decisions when facts and values are at stake.

## Specific Project Purpose

- To explore/create a type of public engagement in decision making about immunization program issues which involves a greater degree of “give and take” with the public than has been the case up to now.
- Goal: Co-forming ideas and viewpoints with scientists and citizens and stakeholders

## PEP2Flu Sponsors To Date

**Lounsbery Foundation **
**Keystone Center **
**Institute of Medicine**
**CDC/National Immunization Program**
**Study Circles Resource Center**
**HHS/National Vaccine Program Office**
**Emory University**

## The Publics

- Representation of the key interest sectors
_**Organized Public**_
- Stakeholder representatives from various organized interest groups
_**Non-Organized Public**_
- Individual citizens from the general public not representing any organization or belonging to one advocating around your issues.

## National Level-Stakeholder VPACE

_**Organized Public**_
- Ten sectors/interests to be represented, including government agencies, consumer groups, vaccine makers, health professionals, minority groups, and others
- Convened by the Keystone Center and IOM
- Steering Group
- Flu experts, ethicists, and public engagement experts as resource persons
- N=40

## Local-Level Individual Citizens VPACE

_**Non-Organized Public**_
- Selected from 4 regions North, South, Mid-West and West
- N=100 per area=400 total
- Demographically similar on age, sex, race
- From jury pools of citizens not needed for duty, civic-minded orgs, sponsor outreach based on network ties
- Also government agency reps, flu experts, ethicists, and public engagement experts as resource persons

## 1

- 3

- 2

- 4 Regions (North, South, MidWest, West) n=400+

| 10 Interest Sectors |  |  |  |  |
| --- | --- | --- | --- | --- |
| 1 | 2 | 3 | 4 | 5 |
| 6 | 7 | 8 | 9 | 10 |

**The Publics**

**Non-Organized Public**

**Organized Public**

**National VPACE n=35**

**Local VPACE n=100+**

**National Framing & ****Informing Conference**

**Workgroup Sessions**

**Final Collective-view ****Developing Conference**

**Draft Final Report**

**Final Report to Decision Makers**

**Region 1 Cross Section of Citizens**
**Local Framing & Informing Conference**

**Region 1 Cross Section of Citizens**
**Small Group Sessions**

**Region 1 Cross Section of Citizens**
**Final Collective-view Developing Conference**

| 2 | 3 | 4 |
| --- | --- | --- |
| n=100+ | n=100+ | n=100+ |
| Feedback Sessions |  |  |

**1**

**3**

**5**

**6**

**8**

**2**

**3**

**4**

**7**

**Vaccine Policy Analysis Collaborative (VPACE) Model: Pandemic Influenza**

## Six Common Sins Leading To Public Engagement Failure 

- 1. Program is entirely process driven—checklist approach rather than defining purpose and promise
- 2. Program does not begin until after the decision is made
- 3. Program is not integrated into the decision process—runs parallel and not synchronized

## Six Common Sins Leading To Public Engagement Failure 

- 4. Public not adequately informed
- 5. There is a disconnect on organizational commitment to public engagement—public is overpromised and ends up bitter toward the process
- 6. There is a lack of broad participation

## Timeline for Public Engagement Pilot Project On Pandemic Influenza (PEP2Flu) 

- National VPACE, 1st meeting, July 13-14, 2005
- Local VPACE, 1st meeting, Georgia, July-August, 2005
- Local VPACE, 2nd meeting, Georgia, July-August, 2005
- National VPACE, 2nd meeting, Washington DC, Sept 7-8, 2005
- Draft report to citizens, Sept 2005

## 1st Cycle Timeline for Public Engagement Pilot Project On Pandemic Influenza (PEP2Flu) 

**Local Feedback Session, Oregon, Sept 2005**
**Local Feedback Session, Nebraska, Sept 2005**
**Local Feedback Session, Massachusetts, Sept 2005**
**Final report to decision makers (1****st**** cycle), Oct 2005**
**Review ongoing developments and refine report every 6 months until the pandemic occurs or the threat diminishes**

## How You Can Help

- Serving as an influenza resource person to the groups
- Identifying organizations in the targeted areas that can assist with recruitment of participants