Rare Disease Day 2015 Conference Day 3: Durhane Wong-Rieger

1. Patient Group Development
and Engagement
Durhane Wong-Rieger, PhD
Consumer Advocare Network
2014Patient Parnter 1

2. Lifecyle of Patient
Organizations
20142
Services to members
Acquisitionofresources
(B)
Entrepreneurial Growth
Driving force: Funding
Success factor: Innovation
Board: Members or Expert
Services: Professional staff
Decisions: Staff
Risk: Member discontent
(D)
Survival
Driving force: Unclear
Success factor: New funding
Board: Either
Services: Staff or volunteers
Decisions: Conflict
Risk: Financial collapse
(C)
Opportunistic Balance
Driving force: Clients & funders
Success factor: Strategic planning
Board: Expert
Services: Professional staff
Decisions: Staff with members
Risk: Bureaucratization
(A)
Missionary
Driving force: Member needs
Success factor: Participation
Board: Members/Clients
Services: Volunteers
Decisions: Collaborative
Risk: Increased demand
Patient Parnter

3. Brief History of Patient Engagement
 Barbarians at the Gates/Tea Party Express (1980s)
 “Outsiders” in the policy process: no legitimate role
 Advocacy: strident, engage public, arouse masses
 Success: issues acknowledged and addressed by “insiders”
 Beggars at the Table/Wedding Crashers (1990s)
 Individuals with little expertise and no votes; distrusted
 Success: issues addressed by “elite”; return invitation
 Strange Bedfellows/How to Tame Your Dragon (2000s)
 Patient groups as partners; gaining credibility and
expertise
 Success: inclusion as equal participants; defined roles
 The Inmates are Running the Asylum (2010s)
 Patient-centred care; self-management; patient driven
 Success: patient rights, needs, perspectives driving
healthcare
3 2014Patient Parnter

4. How Patient Groups Engage
 Solve an individual problem (specialist appointment, access
to treatment & homecare)
 Address problem that affects group of consumers {disease-
specific & community} (hospital parking, clinic hours,
specialist care & emergency; insurance coverage)
 Influence a policy or regulation or law (Drug licensing or
formulary listing, hospital closures; disease-specific
programs, disability assistance, care in rural areas)
 Partner with public and private sector to affect health policy
(patient safety, access to medicines, social determinants of
health)
2014Patient Parnter 4

5. Levels of Patient Engagement
2014Patient Parnter 5
Legitimacy Among Consumers
CredibilityAmongDecision-Makers
Advisory
• Input: Task forces, advisory
groups, designated positions
• Information: Privileged, selective
• Membership: Appointed by others
• Representation: Limited
• Accountability: Decision body
Individual Opinion
• Input: Polls, surveys, complaints,
feedback, ombudsman
• Information: Public
• Membership: None
• Representation: None
• Accountability: None
Member/Driver
• Input: Boards, councils, elected
• positions
• Information: Complete
• Membership: Nominated by group
• Representation: Community
• Accountability: Community, public
Representative
• Input: Focus groups, forums,
• commissions
• Information: Specialized, solicited
• Membership: Solicited
• Representation: Community
• Accountability: None, group

6. Facilitators and Challenges to
Patient Engagement
6
Facilitating Factor Challenging Factor
Real patients with real issues
willing and able to speak out
Personal exposure, impact on
relations with healthcare provider
Group representation of collective
issues; public support
Gaining awareness of affected
and public; legitimacy to public
Credible experts who also
represent patients and groups
Few patient experts; time and
capacity to participate
Education of patient and lay
community on issues and process
Interest of public and patients;
time, competing interests
Perceived success; win-win
partnerships; commitment
Perceived lack of success; no
compelling issues or rationale
System support for patient
partnership; resources available
Available time and resources
among patient participations
Financial support and resources,
including private sector
Perceived conflict of interest and
influence by private sector
2014Patient Parnter

7. Patient-Industry Partnership
Challenge
 Challenge re: “what we want to achieve”
 Agree: Appropriate access to best medicines
 May Disagree: Costs of drugs to sustain industry and cost of drugs to
be affordable to healthcare system
 Challenge re: “how we try to achieve”
 Agree: Government has ultimate responsibility to provide access
 May Disagree: Role of industry to provide access as “interim”
 Challenge re: “how to create pressure”
 Agree: Patient voice is critical and must be direct
 May Disagree: Visibility and influence of industry
 Challenge re: “how to support patient voice”
 Agree: Patient must be genuine
 May Disagree: Role of industry in creating and sustaining patient
voice
2014Patient Parnter 7