Patient and Public EngagementPurpose and People

David GilbertDirector, InHealth Associates

Co-Director, Centre for Patient Leadership19th March 2013

Engaging patients and the public - we all benefit... • Moral• Business• Social and political • Health• Legal

Engaging with patients and the public can happen at two levels: • Individual level – 'my say' in decisions about my own care and treatment (often referred to as shared decision-making)• Collective level – ‘my’ or ‘our say’ in decisions about commissioning and delivery of services

The Engagement Cycle focuses on the collective level

A conceptual framework for PPE

IndividualMy say in decisions about care and treatment

CollectiveOur say in planning, design and delivery of services

Information

Feedback

Influence

Information Feedback Influence

IndividualMy say in decisions about care and treatment

Information to patients about care and treatment

Opportunities for individuals to provide feedback (e.g. PALS, complaints)

Ways that individuals can take more control and/or manage their own condition

CollectiveOur say in planning, design and delivery of services

Information to patients and the public about local services

Opportunities for patients and public to feedback or comment on services (quantitative or qualitative; consultations, etc)

Ways that people can have more input into, or influence over decisions (e.g. co-production, patient/user-led initiatives)

A conceptual framework for PPE

OUTCOMES OUTCOMES OUTCOMES

Be clear about what involvement means• Have a shared understanding of definitions and purpose• Ensure adequate resources - money, time and people

Focus on improvement• Demonstrate change as a result of engagement• Embed systems linking decision-making to impact• Ensure senior commitment and leadership • Support staff and equip them with the necessary skills

Be clear about why you are involving people• Clarify objectives & links to organisational priorities• Explain what can change & what is not negotiable• Use what is already known about people’s perspectives

Key principles of effective PPE (1)

New Approaches (1)

Being clear on purpose:The Engagement Cycle

© NHS Institute for Innovation and Improvement, 2012

The Engagement Cycle : engaging with patients and public throughout the commissioning process

New Approaches (2)

Building capacity:Patient Leaders

Why we need Patient Leaders

• Patients = creative, solution-focused, innovators

• Living with ill-health is seedbed of broader leadership

• 1000s of patients want to help improve things

• NHS turns only to clinical & managerial leaders

• No learning opportunities for Patient Leaders

Systemic Focus

Located in community

Individual focusLocated inside system

Peer to Peer SupporterLay advocateCoachOnline mentor

Formal RepresentativeFT GovernorCCG Lay MemberHW Member HWBB

Informal RepresentativeCCG reference group PPGProgramme Rep Patient/Public advisor

ActivistCampaignerImprovement leader

Community Enabler Health ChampionCommunity Researcher

Patient Entrepreneur Project / initiative leaderBusiness developer

Learning and support for Patient Leaders

• Personalised learning – Focus on learning plan, inquiry proposal, learning objectives and goals aiding

learning transfer

• Inquiry-based learning– Action research methodology, critical reflection learning through work,

practice and taking action, problem solving and thinking skills

• Community of reflective practitioners– Collaboration, face to face & online, Challenge, dialogue with ‘experts’,

support, sharing of findings, checking understanding, critical feedback

• Using and working with the ‘here and now’– Mindful of making assumptions, habits and making the unconscious explicit

and conscious

The Patient Leader Programme- Impact and outcomes -

• Impact on self (confidence, well-being)

• Enhanced dialogue and better relationships

• More transparent decision-making

• Improved service responsiveneness

• Enhanced community well-being

Thankyou

david@centreforpatientleadership.com

www.cpl-uk.com www.inhealthassociates.co.uk