patient group development and engagement

Patient Group Development and Engagement

Durhane Wong-Rieger, PhDConsumer Advocare Network

2014Patient Parnter 1

Lifecyle of Patient Organizations

20142

Services to members

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(B) Entrepreneurial Growth

Driving force: FundingSuccess factor: InnovationBoard: Members or ExpertServices: Professional staff

Decisions: StaffRisk: Member discontent

(D)Survival

Driving force: UnclearSuccess factor: New funding

Board: EitherServices: Staff or volunteers

Decisions: ConflictRisk: Financial collapse

(C)Opportunistic Balance

Driving force: Clients & fundersSuccess factor: Strategic planning

Board: ExpertServices: Professional staff

Decisions: Staff with membersRisk: Bureaucratization

(A)Missionary

Driving force: Member needsSuccess factor: Participation

Board: Members/ClientsServices: Volunteers

Decisions: CollaborativeRisk: Increased demand

Patient Parnter

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

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)


Levels of Patient Engagement


Legitimacy Among Consumers

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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

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

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


patient group development and engagement

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