From rhetoric to reality: stakeholders' involvement in ...

A LAYERED APPROACH TO CO-PRODUCTION AROUND STROKE PROFESSOR CHRISTOPHER R BURTON NOREEN EDWARDS CHAIR OF REHABILITATION AND NURSING RESEARCH IMPROVEMENT SCIENCE FELLOW, HEALTH FOUNDATION PRESENTATION OVERVIEW Setting some co-ordinates Where is knowledge in the stroke system?

Co-production: a layered perspective Some key challenges and potential solutions Case study: stroke and end-of-life care CO-PRODUCTION CLOSER TO HOME Prudent Healthcare achieve health and wellbeing with the public, patients and professionals as equal partners through co-production Co-production enables citizens and

professionals to share power and work together in equal partnership, creating opportunities for people to access support when they need it and to contribute to social change. PRUDENT PRINCIPLES OF CO-PRODUCTION Value all participants as equals and assets Everyone has a contribution to make, whether as experts through experience or experts through training. We should acknowledge this in everything we do, and build from our strengths.

Develop and support peer networks Social capital networks of friendship and support are vital to our health and well- being. Peer networks help to build confidence and give people a voice, and the opportunity to help others. Reciprocity The impulse to give back is universal. Wherever possible, we must replace one-way acts of largesse with two-way transactions. You need me becomes We need each other. Outcomes focus

The focus of co-production is on achieving the outcomes that matter to individuals, rather than on the process of delivering services. The role of the professional is to facilitate that journey. CO-PRODUCTION ACROSS MULTIPLE LAYERS Generation of knowledge about what works in stroke services Healthcare policy Service

(re)design Indi vid ual BROADENING OUR PERSPECTIVE the collaborative process of bringing a plurality of knowledge sources and types together to address a defined problem and build an integrated or systems-oriented understanding of that problem. Armitage et al. (2011)

WHERE IS KNOWLEDGE IN THE STROKE SYSTEM? THE STROKE SYSTEM Mix of generalist and stroke specialist services, located within wider complex systems of people, teams, organisations and sectors Diverse stakeholder group with varying degrees of focus on stroke Bench and applied research programmes Patient focused research priorities / expectations about involvement in research

Across research programmes (e.g. HTA / HSD&R) and infrastructure (e.g. CLAHRCs) National Clinical Guidelines National Improvement Programmes Protocols / care bundles Audit and feedback mechanisms Project or initiative related WHAT KNOWLEDGE IS IN THE STROKE SYSTEM? EVIDENCE FROM

RESEARCH EMBEDDED KNOWLEDGE LOCAL KNOWLEDGE PROFESSIONAL WISDOM SERVICE USER EXPERIENCE

PERFORMANCE KNOWLEDGE A LAYERED PERSPECTIVE TRADITIONAL LAYERS OF COPRODUCTION Individual Evidence-based practice Shared decision- making

Service Experience-based co-design DECISION AIDS Available for a number of issues, such as: Statins Anticoagulants, Atrial

Fibrillation and Stroke Prevention EXPERIENCE-BASED CO-DESIGN GENERATING KNOWLEDGE OF WHAT WORKS IN STROKE SERVICES Closing the gap between what we know and what we practice GAPS IN KNOWLEDGE TRANSLATION?

GAP 1: from the bench to bedside , or the process of transferring basic science knowledge into new drugs and technologies. GAP 2: is the process of taking current scientific knowledge and ensuring it is applied routinely in practice. . Woolf SH: The Meaning of Translational Research and Why it Matters. JAMA 2008, 299:211-213

LIKE WATER THROUGH A PIPE TRADITIONAL & HISTORICAL VIEW Focus on individual (behaviour) Skilling practitioners up As rational actors that can perform evidence-based practice Evidence as a product (e.g. guideline), which has common meaning

Linear logical view of evidence use (push): researchers publication practitioners Lack of consideration of the influence of context of practice/service delivery) (pull) TWO COMMUNITIES

Researche rs Knowledg e Creation Users Knowled ge validatio n

Knowledge Disseminat ion Research priorities Nutley et al 2000; 2008 Knowled ge adoption

IN REALITY Research is only one source of information used for practice and service delivery It gets transformed individually and/or collectively [or can often be ignored] Viewed differently by individuals & groups Action occurs in social and organisational structures which can be more or less facilitative context is KEY! i.e. implementation is not a one-off event

SHIFTING THE FOCUS OF IMPLEMENTATION A NEW LENS ON CO-PRODUCTION? A systematic and interdisciplinary approach to sustained engagement with stakeholders, and their systems, in generating implementable knowledge with impact in healthcare and health The assumption is that knowledge of how to improve healthcare is more likely to have impact if: it addresses stakeholder concerns; is synergistic with conceptual and other frameworks

that are prevalent within relevant systems; is recognised as valuable and credible; and is mobilised in creative and sustained ways throughout encounters between stakeholders. WORKING TOGETHER IN THE KNOWLEDGE SYSTEM? Ontological and Epistemological differences Professional, organisational and other incentives Moving from consultation, through collaboration, towards partnership Who are the key stakeholders? Understanding stakeholder perspectives / systems / contexts Where do stakeholder perspectives come together? What do different stakeholders bring to the table?

Should different stakeholder perspectives be integrated? How should we embed implementation across the knowledge endeavour? What are the skills required to facilitate this knowledge endeavour? CASE STUDY IN STROKE AND END-OF-LIFE CARE AIMS OF THE STUDY To identify patterns of dying in acute stroke services To explore patient and family carer

experiences To explore clinical decision-making around end of life care in acute stroke DESIGN ISSUES Stakeholder perspectives Service user Patient Family carers

Professionals Different professional groups Mixed methods design: Observational study Biographical, clinical and service data were collected from consecutive admissions to four UK acute stroke services over a 6-month period Dying trajectories classified as sudden,

rapid, episodic, slow decline or other Interviews With patients, family carers and bereaved relatives Think-aloud study With members of the multi-disciplinary team INTERVIEWS WITH PATIENTS AND FAMILIES Paying attention to clinical geography, and

resonance with information giving Honesty is the best policy, with displayed compassion and concern Formalising information-giving through technologies or systems Considerable forgiveness for system problems WHAT WERE STAFF THINKING ABOUT?

Developing an understanding, or mental model of what is happening to the patient The level of involvement to have in the patients care What additional information to seek, or investigations to make (if any) Establishing parameters for the escalation of active intervention / ceilings of care Commencing best interest / advance directive /

palliative care / end of life care discussions with families THINKING PROCESSES The overarching thinking processes uncovered in our data were: Evaluating signs and symptoms Seeking more information by completing more investigations Seeking the views of others and confirmation of decisions through peers, members of the team and family members Drawing on personal resources of clinical experience

Putting things into an individual context, by focusing on the patients pre-stroke life, wishes and preferences Placing the self within the context of the decision Looking to the future considering the potentiality of death and possible future scenarios APPROACHES TO DECISION-MAKING IMPACTS OF CO-PRODUCTION Greater understanding (and sharing) of the perspectives of

different stakeholders Communication around end of life issues / permission Rejecting the notion of the good death Acknowledgment of the emotional work of palliative and end of life care Identification of a middle-ground / approach to practice between research, professionals and service users We can plan for the worst, but hope for the best Service improvement and research challenges

The development and testing of strategies that support implementation of this approach to palliative care practice ACKNOWLEDGEMENTS Funders of research projects referred to in this presentation Health Foundation Marie Curie Cancer Care Health Care Research Wales National Institute for Health Research Stakeholders who have engaged in these studies. For further information: [email protected]

@chrisburton5

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