Patient and Public Engagement Purpose and People David Gilbert Director, InHealth Associates Co-Director, Centre for Patient Leadership 19 th 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 Individual My say in decisions about care and treatment Collective Our say in planning, design and delivery of services Information Feedback Influence

InformationFeedbackInfluence Individual My 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 Collective Our 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

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 focus Located inside system Peer to Peer Supporter Lay advocate Coach Online mentor Formal Representative FT Governor CCG Lay Member HW Member HWBB Informal Representative CCG reference group PPG Programme Rep Patient/Public advisor Activist Campaigner Improvement leader Community Enabler Health Champion Community Researcher Patient Entrepreneur Project / initiative leader Business 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