Interprofessional learning in primary care: An exploration of the service user experience leads to a new model for co-learning Louise Worswick, Christine Little, Kath Ryan, Eloise Carr PII: DOI: Reference:
S0260-6917(14)00191-9 doi: 10.1016/j.nedt.2014.05.007 YNEDT 2737
To appear in:
Nurse Education Today
Received date: Revised date: Accepted date:
13 November 2013 28 March 2014 21 May 2014
Please cite this article as: Worswick, Louise, Little, Christine, Ryan, Kath, Carr, Eloise, Interprofessional learning in primary care: An exploration of the service user experience leads to a new model for co-learning, Nurse Education Today (2014), doi: 10.1016/j.nedt.2014.05.007
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ACCEPTED MANUSCRIPT Topic: Role of the service user
INTERPROFESSIONAL LEARNING IN PRIMARY CARE: AN EXPLORATION OF THE SERVICE USER EXPERIENCE LEADS TO A NEW MODEL FOR COLEARNING
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Title:
Word Count: 4833 words
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Lead Author:
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Louise Worswick - Researcher School of Health & Social Care Bournemouth House
BH1 3LH
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Bournemouth
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Christchurch Road
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Bournemouth University
[email protected]
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01202 430393 Other authors:
Christine Little - Senior Lecturer School of Health & Social Care Bournemouth House Bournemouth University Christchurch Road Bournemouth BH1 3LH [email protected] 01202 961307 1
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Kath Ryan - Associate Professor
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School of Nursing and Midwifery
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La Trobe University
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Melbourne Australia [email protected]
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+613 9479 5805
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and
Bournemouth House
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Bournemouth University
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School of Health & Social Care
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Visiting Professor
Christchurch Road
BH1 3LH
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Bournemouth
Eloise Carr – Professor Faculty of Nursing University of Calgary Canada [email protected] (403) 220 6267
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ACKNOWLEDGEMENT
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The parent study – the LIMBIC project – from which this current study arose was funded by
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an award from The Health Foundation.
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ACCEPTED MANUSCRIPT Interprofessional learning in primary care: an exploration of the service user experience leads to a new model for co-learning
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INTRODUCTION
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This paper describes the experience of the service users who were involved in an
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interprofessional quality improvement initiative about the management of back pain in primary care – the Learning to Improve the Management of Back Pain in the Community (LIMBIC) project. A model for co-learning which emerged as an output from the exploration of the service user experience is presented. Service users in this study were people with
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back pain who were invited by their practice team to participate in the LIMBIC project.
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LITERATURE OVERVIEW
Our knowledge about the involvement of patients as partners in primary care research lacks detailed exploration of their experience of involvement and is limited to the impact of
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involvement and the barriers to involvement (Staley 2009). Some researchers have begun to
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reflect on the experience of patient involvement in research and further evidence is emerging (INVOLVE 2013; Barber et al. 2011; Pandya 2010; Cotterell et al. 2008; Telford et al. 2004).
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A distinct gap in this recent evidence is about the experience of service user involvement in learning with primary health care teams about quality improvement in practice.
It is not always clear whether service user involvement is aimed at benefitting researchers or
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patients. Researchers may involve service users in their work in order to gain support for their decisions, whereas others may do so to encourage service users to challenge them in their decisions (Thompson et al. 2012; Lehoux et al. 2012). This illustrates the importance of ensuring that the role of the service user is clear (Armstrong et al. 2013).
Arguments about the representativeness of lay people who become experts has gained momentum with suggestions that the service user as credible expert is a paradox because their professionalisation leads to them losing their focus on what is important for patients (El Enany et al. 2013; Staley 2013; Lehoux et al. 2012; Martin 2008). This debate challenges the perceived altered status of the professionalised service user and, as Ives et al. (2012) suggest, perhaps researchers need to adjust their ways of working with service users when service users become experts in their field.
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ACCEPTED MANUSCRIPT In the search for what is important to service users, the literature points to areas such as service users’ motivations and expectations of engaging in research, the sharing of their views and experiences, their perceived experiences of empowerment and gaining confidence and what it means to be involved in research in a service user role. Careful
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planning of the recruitment process, or when first “making connections” (Morrow et al. 2012
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p60), is essential in preparing service users for their role and facilitating their involvement so
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that true partnerships can flourish (Armstrong et al. 2013; Caldon et al. 2010). Role descriptions, information packs, reimbursement of travelling costs, buddy systems, flexibility, time and an open approach from the researchers are all part of the supporting infrastructure
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that can help to contribute to successful recruitment and continued engagement.
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AIM OF THIS RESEARCH
The LIMBIC project utilised a mixed methods approach to evaluate the impact of an educational initiative on clinical practice and clinical outcomes for the management of back pain. In a primary care setting, the LIMBIC project involved a series of eight workshops with
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nine general practice teams. The teams attending the workshops were clinical and non-
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clinical practice staff and each team included a service user from the practice. In the context of the LIMBIC project the service users were referred to as patient representatives The
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project evaluated the impact of the practice teams’ learning about quality improvement and their management of patients with back pain. The patient representatives participated in the workshops learning about continuous quality improvement principles and methods and working with practice teams in identifying and implementing changes in their GP practice
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(Carr et al. 2012; Breen at al. 2011).
The LIMBIC study illustrated several examples of known good practice in service user involvement in research such as the motivating factors for engaging in research (Cotterell et al. 2008; Tarpey 2006), the importance of mutual support (Quinlan and Robertson 2010), the approach towards learning and the structure of the learning environment (Fischer and Ereaut 2012; Greenhalgh et al. 2011) and the attitudes and values of the research team and other co-learners (General Social Care Council 2012; Staley 2009).
This current study explored the experiences of the patient representatives from the LIMBIC project who brought their experiences as patients with back pain. The study question asked, “What is the experience of service users who participate in interprofessional education research with primary health care teams?” A pragmatic philosophical approach was used to explore the meaning of peoples’ experiences which allowed the inquiry to use methods and 5
ACCEPTED MANUSCRIPT tools that worked out to be most effective in the circumstances (Cresswell 2014). Without any unique principles for approaching the research, pragmatism allowed for a focus on the research problem as opposed to the research methods. Ethics Committee approval was
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METHODS
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granted through the National Research Ethics Service.
Eleven patient representatives, uniquely placed as co-learners, participated in the LIMBIC project and to build on this learning initiative, the current study used semi-structured interviews to explore their experiences and integrated the findings with analysis of existing
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LIMBIC data. The methods and findings of this study have been described elsewhere (Worswick 2013). To summarise, a thematic analysis of the interview data and a mix of
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methods of analysis of the data from the LIMBIC project such as content analysis and document analysis led to the development of three key themes which described the service
FINDINGS
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user experience.
A co-learning model emerged from the thematic analysis which can be applied to service
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user involvement in interprofessional health care learning (Figure 1). Whilst the setting from which this model emerged was an educational setting with primary health care professionals, it could be applied to service user involvement across the health education sector and its credibility is grounded in data from this research. Three broad concepts make up the model;
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preparation, environment and partnership (Figure 2).
Preparation
(i) Making time and active listening Providing time to engage in discussion and listen to one another is part of the preparatory work that is needed for co-learning to take place. In health care settings, time is a frequently cited reason for lack of engagement, failure to change and inability to listen. The effort required to provide time for learning is valued by those who engage and should not to be underestimated. The effect of service user involvement on the study outcome can be beneficial when time is well managed.
(ii) Clear aim and purpose
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ACCEPTED MANUSCRIPT Clarity of aim and purpose are essential components of the co-learning model. Uniqueness of purpose can be a defining characteristic and setting clear aims means that participants know what to expect. Expectations need to be articulated so that any misunderstandings can be identified and unrealistic expectations avoided. Clear communication processes allow
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for uncertainties to be identified and addressed and informed participants can engage with
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confidence.
(iii) Introductory and on-going support
Some of the supportive structures of the model have been illustrated by others but none
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have drawn together these particular components to form a model of a co-learning partnership. In this model, service users and health care professionals gain access to information and support to help them make an informed decision about whether they wish to
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engage and are then provided with on-going support to facilitate their continued engagement. They are also supported if their choice is to opt out. Good support leads to a better understanding, more active input and reassurance for the learners. The research team
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needs to be clear about the information that is to be provided for service users and needs to
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allocate time towards planning this support phase.
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Environment
The environment for effective co-learning combines personal values and virtues such as respect and honesty, treating each other as equals, commitment and sharing a passion for the goals of a project. The physical environment is important for the learning experience
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where participants might come from disparate professional and social backgrounds. The absence of hierarchical structures facilitates a neutral environment where learners feel equal. Participants feel safe and secure about being open in their discussions and disclosures. This combination creates opportunities for the co-learning partnership to evolve.
Partnership Each individual enters into a project with their own story to tell about their experience. They hold their individual set of beliefs and behaviours which are unique to them. They hold their individual perceptions and understandings about the project, which might be about back pain for example, or about health care provision. Some might have their own particular goals for what they want to achieve. In the co-learning setting, each person has their preferred learning style and yet each can bring their own willingness to learn and readiness to influence change (Figure 3). Each service user brings their individual beliefs, values and everyday experiences. The experiential knowledge of service users is a source of advice 7
ACCEPTED MANUSCRIPT that cannot be substituted by professional knowledge and so makes the service user contribution a legitimate one. These mechanisms illustrate how individuals learn about each other’s perceptions as they
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embark on a learning experience together. By sharing their experiences and their stories
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they can come to share beliefs, behaviours, perceptions, understanding and goals for what
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they want to achieve through the project. They progress towards making and influencing changes through their shared learning experience. By sharing their stories, a new story is created and previously held beliefs might change. With a renewed understanding, learners can achieve their shared goals within the co-learning relationship. Learners can become
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empowered to lead the change.
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DISCUSSION
For the service users in this study, learning with, from and about their practice team colearners led to them feeling empowered. For some there were unmet expectations and
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feelings of regret, reflecting a weakness in the preparation for their role. The management of
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the service users’ expectations and the creation of the right settings for the learning environment permitted a co-learning partnership to be formed. From this study, a model for
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co-learning was developed and the following discussion is structured to reflect the concepts which make up the model.
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Co-learning between the patient representatives and practice teams in this study mirrored that described by Rutherford (2011). In the parent study (LIMBIC) roles altered in relation to their task. They moved between being expert and novice, teacher and learner (Benner 2004). They learnt about quality improvement, the management of back pain and primary care. They were then able to apply this new knowledge to the practice improvement projects which led to new ways of working for the practice teams. The patient representatives moved to new ways of thinking about how back pain should be managed as they embraced the role of self-management. They learned about their clinical condition and about the ways in which the practice teams worked, which gave them a better understanding of primary care. All participants were involved in deciding the content of the workshops as they identified their learning needs and they participated in knowledge exchange through teaching others and learning from others. Building reflection into the process is also an important part of the colearning culture (Morrow et al. 2012; Gillard et al. 2012; Barber et al. 2011).
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ACCEPTED MANUSCRIPT Before their engagement in the LIMBIC project, patient representatives described health care professionals in primary care as being in a different world, like actors on a stage. They viewed the workings of the primary care system but they did not engage. Their role was passive. Their involvement in the LIMBIC study gave them insight into the working lives of
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the actors and they engaged in dialogue together. Participants realised they could share
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goals and they applied this new learning to create changes in the clinical setting.
Recent developments in the literature around service user involvement are about the clear need for improvements in the quality of undertaking and reporting research involving service
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users. A new question that has emerged asks who benefits from service user involvement as researchers seem to differ in their views about this when service user feedback is
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sometimes ignored. New definitions are appearing about the role of the service user as they become teachers, leaders and, as this study shows, co-learners. These new definitions position the body of evidence ready to move into new territory as researchers, health care professionals and policy makers recognise the breadth and depth of the potential impact of
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service user involvement on the quality of health care.
Service user involvement in the future is predicted to bring about a shift in power from
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professionals to a more equal partnership (General Social Care Council 2012). It takes courage on the part of the researchers or health care professionals to give service users control but this leap of faith can lead to a difference being made as a result of partnership working (McKeown et al. 2010; Beresford and Wallcraft 1997). Power sharing can contribute
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to the achievement of goals and attitudinal change.
Partnerships can be most influential at grass roots level when service users contribute to patient information resources, enhance access to services, and improve the care environment (Attree et al. 2011; Pandya 2010). For future health care provision, a model being promoted for Clinical Commissioning Groups in the UK focuses on involving patients as partners in evaluating and improving care (National Institute for Health Research Central Commissioning Facility 2013; Dawda et al. 2010). Others have criticised the new arrangements because they downgrade the place of service user involvement and equate patient involvement to patient choice (Tritter and Koivusalo 2013).
Patient representatives in this study recognised that the non-hierarchical approach facilitated collaborative working in the learning environment and it was very different from the usual dynamic in the clinical encounter. The experience for most of the people who were involved 9
ACCEPTED MANUSCRIPT in this study was one of a shared journey where co-learning and co-constructing created new meanings. Service users who are placed with equal status to health professionals in their service user role are expected to engage confidently in debate to defend their opinions which might not be easy for them. In this study, the co-learning environment that was
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created allowed the patient representatives to engage freely and they were supported and
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encouraged to lead with their points of view, their stories and their knowledge.
The co-learner role of the service user working alongside healthcare professionals led to coproduction in the context of quality improvement. The patient representatives and practice teams developed improvements in practice as a consequence of their learning together. The
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conditions for working together and learning together were evidence-based and responded to an identified need (Breen et al. 2007). The important features of co-learning were optimised due to the preparation and planning that took place but there were also
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weaknesses in these plans which influenced the patient representatives’ experiences such as the timing of their recruitment.
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In this study, the focus on developing and maintaining good communication led to a changed
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relationship, to one in which openness and equality became the norm. It is considered good practice in quality improvement in clinical communities to establish shared norms of conduct
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where members of the community become united by a common purpose to learn or share knowledge and take responsibility for achieving their aims (Aveling et al. 2012; Dawda et al. 2010). Holding the community together was achieved by involving patients as well as healthcare professionals, working across disciplinary boundaries and sharing experiences.
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Trust, honesty and respect prevailed amongst the individuals who were engaged together. Patient representatives felt that they had the freedom to speak. A source of untapped knowledge, in collaboration with the project team, they co-created a facilitative, respectful learning environment.
The patient representatives shared their experiences about their engagement with the practice teams, their views on the presentations in the workshops and their experiences of their medical condition. Previous work has shown that peer support enhances learning and creates fruitful working relationships (Barber et al. 2011; Staley 2009). This collaborative approach by the patient representatives contributed to their experience by helping to provide an environment where open discussion and sharing of opinions formed part of the colearning culture. This led to the group having the confidence to take lead positions later in the project such as in making a film, speaking at conferences and sharing their opinions with clinically qualified co-learners. 10
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Promoting patients as leaders, a new movement which started in the voluntary sector, is gaining momentum in health care. It describes the qualities of a patient leader as being similar to a strategic leader with a capacity for self-leadership, the ability to focus on
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solutions and willingness to value and work with others (Doughty and Gilbert 2012).
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Researchers predict seeing patient leaders working alongside health care leaders in the
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future to create service improvement through co-production (King’s Fund 2013). This mirrors the way in which patient representatives undertook their role in this study. The patient representatives described how they entered into a study which was not just about watching the health care professionals learn. It was about engaging genuinely in a process which they
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fully understood and in which they were trusted to lead in teaching others about involving
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service users in service improvement, co-production and co-learning.
Service users in this study described the good, the fair and the poor, the frustration and delight, the regret and the anger, the togetherness and the surprise. They learnt, they benefitted, they felt equal and they were valued. They were outsider and insider, and they
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began to see things in a different light. They tried hard and sometimes felt inadequate. One
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of the most important things for them was the fact that they were listened to. Sharing a learning journey with colleagues from their practice team and the outcomes of their
knowledge.
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endeavours led to self-development, practice improvement and co-production of new
The co-learning model is proposed as a guiding framework for health care professionals,
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researchers and educators for use in planning and undertaking service user involvement when their role is that of co-learner. It outlines the features for service users that can influence their experience and which they identified as important to them. Service users who are well informed and understand their role can be expected to contribute to a study in ways that they feel comfortable and in ways that they understand can satisfy the study aims for service user involvement. If they are well supported and nurtured through their experience this may benefit the study by drawing upon lived experiences to inform others about the patient experience. Study contexts will differ, not all components of the co-learning model will always be required or work but this model can be adapted to the context.
The purpose of this study was to gain insight into the service user experience by exploring the experiences of health service users engaged in a specific research project. It explored the experience of a group of patient representatives in their co-learning role. The findings were presented as themes which yielded insight and held within them several key concepts 11
ACCEPTED MANUSCRIPT which cohere to form a model for future successful co-learning (Worswick 2013). A model evolved through on-going analysis of the study findings and their interpretations and is proposed as a framework for a co-learning partnership which could be applied in other health settings. Grounded in the data from this study the model offers sound proposals for
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others who plan to work with service users and it highlights shortfalls which could be avoided
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to optimise the service user experience.
The tools used to gain these insights were interviews, research records, learning material and a pragmatic approach towards exploring the service user experience, analysing a variety of types of data through trying various methods and exploring patient representatives’
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experiences through semi-structured interviews. Specifically designed strategies for data
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collection, data management and data analysis guided the research processes.
CONCLUSION
This robust research study engaged with people who endured difficulties in their healthcare
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experiences and who wanted to make a difference for others. Outlining a clear purpose
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meant this study achieved what it set out to do. The question was not about involving people in research or about what impact they had on the outcome. This research wanted to know
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what people go through when they get involved as service users. This study has illustrated that service users require clarity about their role and efforts need to be made in recruiting and preparing them for their experience of service user involvement. They also need ongoing support in their partnership role. A model for co-learning emerged from the study
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which draws upon these key features. The uniqueness of this co-learning model is that its source is from the service user perspective. This is also a limitation and further research should be undertaken to draw upon the persepctives of health care professional and researchers in relation to co-learning in order to build upon the current model.
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A shared learning experience
No hierarchy Neutral Secure Open Safe
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Co-learning partnership
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Commitment Respect Equality Honesty Passion
Influencing change
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The individual approach
Environment
Clear aim and purpose
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Active listening
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Making time
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A MODEL FOR CO-LEARNING
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Figure 1. Outline model for co-learning to influence change
Articulated realistic expectations
Clear communication
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Introductory and on-going support
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Key to components Shared learning experience – partnership Environment Preparation
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ACCEPTED MANUSCRIPT Figure 2. Concepts for co-learning
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Concepts of the co-learning model
Preparation - the support system for the model is made up of crucial ingredients for effective
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co-learning and these are about the preparation that is required; making time and active listening, having a clear aim and purpose and clearly articulated and realistic expectations. Clear communication processes and the provision of introductory and on-going support are
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also required in preparing for and facilitating co-learning.
Environment - creating the right environment occurs by encouraging shared values and
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attitudes and creating a setting where there is no hierarchy and participants feel safe and secure.
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Partnership - a shared learning experience can then evolve from what each individual
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influencing change.
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learner brings. The partnership working which results can lead participants towards
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ACCEPTED MANUSCRIPT Figure 3. Progression of the partnership learning experience
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Creating a story Changed beliefs Changed behaviour Changed perceptions Renewed understanding Common goals Co-learning Leading the change
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Sharing stories Sharing beliefs Sharing behaviour Sharing perceptions Sharing understanding Sharing goals Sharing learning Making change
Influencing change
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Individual story Individual beliefs Individual behaviour Individual perceptions Individual understanding Individual goals Learning styles Readiness to change
A shared learning experience
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The individual approach
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ACCEPTED MANUSCRIPT Highlights
Contribution to knowledge development within this theme
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The experience of service user involvement from the service user perspective Examples of good practice
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Research planning and design, recruitment of service users and managing expectations require careful planning
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S0260-6917(14)00191-9 doi: 10.1016/j.nedt.2014.05.007 YNEDT 2737
To appear in:
Nurse Education Today
Received date: Revised date: Accepted date:
13 November 2013 28 March 2014 21 May 2014
Please cite this article as: Worswick, Louise, Little, Christine, Ryan, Kath, Carr, Eloise, Interprofessional learning in primary care: An exploration of the service user experience leads to a new model for co-learning, Nurse Education Today (2014), doi: 10.1016/j.nedt.2014.05.007
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ACCEPTED MANUSCRIPT Topic: Role of the service user
INTERPROFESSIONAL LEARNING IN PRIMARY CARE: AN EXPLORATION OF THE SERVICE USER EXPERIENCE LEADS TO A NEW MODEL FOR COLEARNING
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Title:
Word Count: 4833 words
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Lead Author:
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Louise Worswick - Researcher School of Health & Social Care Bournemouth House
BH1 3LH
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Bournemouth
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Christchurch Road
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Bournemouth University
[email protected]
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01202 430393 Other authors:
Christine Little - Senior Lecturer School of Health & Social Care Bournemouth House Bournemouth University Christchurch Road Bournemouth BH1 3LH [email protected] 01202 961307 1
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Kath Ryan - Associate Professor
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School of Nursing and Midwifery
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La Trobe University
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Melbourne Australia [email protected]
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+613 9479 5805
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and
Bournemouth House
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Bournemouth University
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School of Health & Social Care
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Visiting Professor
Christchurch Road
BH1 3LH
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Bournemouth
Eloise Carr – Professor Faculty of Nursing University of Calgary Canada [email protected] (403) 220 6267
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ACKNOWLEDGEMENT
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The parent study – the LIMBIC project – from which this current study arose was funded by
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an award from The Health Foundation.
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ACCEPTED MANUSCRIPT Interprofessional learning in primary care: an exploration of the service user experience leads to a new model for co-learning
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INTRODUCTION
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This paper describes the experience of the service users who were involved in an
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interprofessional quality improvement initiative about the management of back pain in primary care – the Learning to Improve the Management of Back Pain in the Community (LIMBIC) project. A model for co-learning which emerged as an output from the exploration of the service user experience is presented. Service users in this study were people with
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back pain who were invited by their practice team to participate in the LIMBIC project.
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LITERATURE OVERVIEW
Our knowledge about the involvement of patients as partners in primary care research lacks detailed exploration of their experience of involvement and is limited to the impact of
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involvement and the barriers to involvement (Staley 2009). Some researchers have begun to
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reflect on the experience of patient involvement in research and further evidence is emerging (INVOLVE 2013; Barber et al. 2011; Pandya 2010; Cotterell et al. 2008; Telford et al. 2004).
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A distinct gap in this recent evidence is about the experience of service user involvement in learning with primary health care teams about quality improvement in practice.
It is not always clear whether service user involvement is aimed at benefitting researchers or
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patients. Researchers may involve service users in their work in order to gain support for their decisions, whereas others may do so to encourage service users to challenge them in their decisions (Thompson et al. 2012; Lehoux et al. 2012). This illustrates the importance of ensuring that the role of the service user is clear (Armstrong et al. 2013).
Arguments about the representativeness of lay people who become experts has gained momentum with suggestions that the service user as credible expert is a paradox because their professionalisation leads to them losing their focus on what is important for patients (El Enany et al. 2013; Staley 2013; Lehoux et al. 2012; Martin 2008). This debate challenges the perceived altered status of the professionalised service user and, as Ives et al. (2012) suggest, perhaps researchers need to adjust their ways of working with service users when service users become experts in their field.
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ACCEPTED MANUSCRIPT In the search for what is important to service users, the literature points to areas such as service users’ motivations and expectations of engaging in research, the sharing of their views and experiences, their perceived experiences of empowerment and gaining confidence and what it means to be involved in research in a service user role. Careful
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planning of the recruitment process, or when first “making connections” (Morrow et al. 2012
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p60), is essential in preparing service users for their role and facilitating their involvement so
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that true partnerships can flourish (Armstrong et al. 2013; Caldon et al. 2010). Role descriptions, information packs, reimbursement of travelling costs, buddy systems, flexibility, time and an open approach from the researchers are all part of the supporting infrastructure
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that can help to contribute to successful recruitment and continued engagement.
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AIM OF THIS RESEARCH
The LIMBIC project utilised a mixed methods approach to evaluate the impact of an educational initiative on clinical practice and clinical outcomes for the management of back pain. In a primary care setting, the LIMBIC project involved a series of eight workshops with
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nine general practice teams. The teams attending the workshops were clinical and non-
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clinical practice staff and each team included a service user from the practice. In the context of the LIMBIC project the service users were referred to as patient representatives The
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project evaluated the impact of the practice teams’ learning about quality improvement and their management of patients with back pain. The patient representatives participated in the workshops learning about continuous quality improvement principles and methods and working with practice teams in identifying and implementing changes in their GP practice
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(Carr et al. 2012; Breen at al. 2011).
The LIMBIC study illustrated several examples of known good practice in service user involvement in research such as the motivating factors for engaging in research (Cotterell et al. 2008; Tarpey 2006), the importance of mutual support (Quinlan and Robertson 2010), the approach towards learning and the structure of the learning environment (Fischer and Ereaut 2012; Greenhalgh et al. 2011) and the attitudes and values of the research team and other co-learners (General Social Care Council 2012; Staley 2009).
This current study explored the experiences of the patient representatives from the LIMBIC project who brought their experiences as patients with back pain. The study question asked, “What is the experience of service users who participate in interprofessional education research with primary health care teams?” A pragmatic philosophical approach was used to explore the meaning of peoples’ experiences which allowed the inquiry to use methods and 5
ACCEPTED MANUSCRIPT tools that worked out to be most effective in the circumstances (Cresswell 2014). Without any unique principles for approaching the research, pragmatism allowed for a focus on the research problem as opposed to the research methods. Ethics Committee approval was
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METHODS
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granted through the National Research Ethics Service.
Eleven patient representatives, uniquely placed as co-learners, participated in the LIMBIC project and to build on this learning initiative, the current study used semi-structured interviews to explore their experiences and integrated the findings with analysis of existing
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LIMBIC data. The methods and findings of this study have been described elsewhere (Worswick 2013). To summarise, a thematic analysis of the interview data and a mix of
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methods of analysis of the data from the LIMBIC project such as content analysis and document analysis led to the development of three key themes which described the service
FINDINGS
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user experience.
A co-learning model emerged from the thematic analysis which can be applied to service
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user involvement in interprofessional health care learning (Figure 1). Whilst the setting from which this model emerged was an educational setting with primary health care professionals, it could be applied to service user involvement across the health education sector and its credibility is grounded in data from this research. Three broad concepts make up the model;
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preparation, environment and partnership (Figure 2).
Preparation
(i) Making time and active listening Providing time to engage in discussion and listen to one another is part of the preparatory work that is needed for co-learning to take place. In health care settings, time is a frequently cited reason for lack of engagement, failure to change and inability to listen. The effort required to provide time for learning is valued by those who engage and should not to be underestimated. The effect of service user involvement on the study outcome can be beneficial when time is well managed.
(ii) Clear aim and purpose
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ACCEPTED MANUSCRIPT Clarity of aim and purpose are essential components of the co-learning model. Uniqueness of purpose can be a defining characteristic and setting clear aims means that participants know what to expect. Expectations need to be articulated so that any misunderstandings can be identified and unrealistic expectations avoided. Clear communication processes allow
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for uncertainties to be identified and addressed and informed participants can engage with
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confidence.
(iii) Introductory and on-going support
Some of the supportive structures of the model have been illustrated by others but none
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have drawn together these particular components to form a model of a co-learning partnership. In this model, service users and health care professionals gain access to information and support to help them make an informed decision about whether they wish to
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engage and are then provided with on-going support to facilitate their continued engagement. They are also supported if their choice is to opt out. Good support leads to a better understanding, more active input and reassurance for the learners. The research team
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needs to be clear about the information that is to be provided for service users and needs to
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allocate time towards planning this support phase.
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Environment
The environment for effective co-learning combines personal values and virtues such as respect and honesty, treating each other as equals, commitment and sharing a passion for the goals of a project. The physical environment is important for the learning experience
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where participants might come from disparate professional and social backgrounds. The absence of hierarchical structures facilitates a neutral environment where learners feel equal. Participants feel safe and secure about being open in their discussions and disclosures. This combination creates opportunities for the co-learning partnership to evolve.
Partnership Each individual enters into a project with their own story to tell about their experience. They hold their individual set of beliefs and behaviours which are unique to them. They hold their individual perceptions and understandings about the project, which might be about back pain for example, or about health care provision. Some might have their own particular goals for what they want to achieve. In the co-learning setting, each person has their preferred learning style and yet each can bring their own willingness to learn and readiness to influence change (Figure 3). Each service user brings their individual beliefs, values and everyday experiences. The experiential knowledge of service users is a source of advice 7
ACCEPTED MANUSCRIPT that cannot be substituted by professional knowledge and so makes the service user contribution a legitimate one. These mechanisms illustrate how individuals learn about each other’s perceptions as they
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embark on a learning experience together. By sharing their experiences and their stories
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they can come to share beliefs, behaviours, perceptions, understanding and goals for what
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they want to achieve through the project. They progress towards making and influencing changes through their shared learning experience. By sharing their stories, a new story is created and previously held beliefs might change. With a renewed understanding, learners can achieve their shared goals within the co-learning relationship. Learners can become
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empowered to lead the change.
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DISCUSSION
For the service users in this study, learning with, from and about their practice team colearners led to them feeling empowered. For some there were unmet expectations and
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feelings of regret, reflecting a weakness in the preparation for their role. The management of
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the service users’ expectations and the creation of the right settings for the learning environment permitted a co-learning partnership to be formed. From this study, a model for
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co-learning was developed and the following discussion is structured to reflect the concepts which make up the model.
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Co-learning between the patient representatives and practice teams in this study mirrored that described by Rutherford (2011). In the parent study (LIMBIC) roles altered in relation to their task. They moved between being expert and novice, teacher and learner (Benner 2004). They learnt about quality improvement, the management of back pain and primary care. They were then able to apply this new knowledge to the practice improvement projects which led to new ways of working for the practice teams. The patient representatives moved to new ways of thinking about how back pain should be managed as they embraced the role of self-management. They learned about their clinical condition and about the ways in which the practice teams worked, which gave them a better understanding of primary care. All participants were involved in deciding the content of the workshops as they identified their learning needs and they participated in knowledge exchange through teaching others and learning from others. Building reflection into the process is also an important part of the colearning culture (Morrow et al. 2012; Gillard et al. 2012; Barber et al. 2011).
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ACCEPTED MANUSCRIPT Before their engagement in the LIMBIC project, patient representatives described health care professionals in primary care as being in a different world, like actors on a stage. They viewed the workings of the primary care system but they did not engage. Their role was passive. Their involvement in the LIMBIC study gave them insight into the working lives of
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the actors and they engaged in dialogue together. Participants realised they could share
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goals and they applied this new learning to create changes in the clinical setting.
Recent developments in the literature around service user involvement are about the clear need for improvements in the quality of undertaking and reporting research involving service
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users. A new question that has emerged asks who benefits from service user involvement as researchers seem to differ in their views about this when service user feedback is
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sometimes ignored. New definitions are appearing about the role of the service user as they become teachers, leaders and, as this study shows, co-learners. These new definitions position the body of evidence ready to move into new territory as researchers, health care professionals and policy makers recognise the breadth and depth of the potential impact of
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service user involvement on the quality of health care.
Service user involvement in the future is predicted to bring about a shift in power from
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professionals to a more equal partnership (General Social Care Council 2012). It takes courage on the part of the researchers or health care professionals to give service users control but this leap of faith can lead to a difference being made as a result of partnership working (McKeown et al. 2010; Beresford and Wallcraft 1997). Power sharing can contribute
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to the achievement of goals and attitudinal change.
Partnerships can be most influential at grass roots level when service users contribute to patient information resources, enhance access to services, and improve the care environment (Attree et al. 2011; Pandya 2010). For future health care provision, a model being promoted for Clinical Commissioning Groups in the UK focuses on involving patients as partners in evaluating and improving care (National Institute for Health Research Central Commissioning Facility 2013; Dawda et al. 2010). Others have criticised the new arrangements because they downgrade the place of service user involvement and equate patient involvement to patient choice (Tritter and Koivusalo 2013).
Patient representatives in this study recognised that the non-hierarchical approach facilitated collaborative working in the learning environment and it was very different from the usual dynamic in the clinical encounter. The experience for most of the people who were involved 9
ACCEPTED MANUSCRIPT in this study was one of a shared journey where co-learning and co-constructing created new meanings. Service users who are placed with equal status to health professionals in their service user role are expected to engage confidently in debate to defend their opinions which might not be easy for them. In this study, the co-learning environment that was
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created allowed the patient representatives to engage freely and they were supported and
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encouraged to lead with their points of view, their stories and their knowledge.
The co-learner role of the service user working alongside healthcare professionals led to coproduction in the context of quality improvement. The patient representatives and practice teams developed improvements in practice as a consequence of their learning together. The
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conditions for working together and learning together were evidence-based and responded to an identified need (Breen et al. 2007). The important features of co-learning were optimised due to the preparation and planning that took place but there were also
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weaknesses in these plans which influenced the patient representatives’ experiences such as the timing of their recruitment.
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In this study, the focus on developing and maintaining good communication led to a changed
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relationship, to one in which openness and equality became the norm. It is considered good practice in quality improvement in clinical communities to establish shared norms of conduct
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where members of the community become united by a common purpose to learn or share knowledge and take responsibility for achieving their aims (Aveling et al. 2012; Dawda et al. 2010). Holding the community together was achieved by involving patients as well as healthcare professionals, working across disciplinary boundaries and sharing experiences.
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Trust, honesty and respect prevailed amongst the individuals who were engaged together. Patient representatives felt that they had the freedom to speak. A source of untapped knowledge, in collaboration with the project team, they co-created a facilitative, respectful learning environment.
The patient representatives shared their experiences about their engagement with the practice teams, their views on the presentations in the workshops and their experiences of their medical condition. Previous work has shown that peer support enhances learning and creates fruitful working relationships (Barber et al. 2011; Staley 2009). This collaborative approach by the patient representatives contributed to their experience by helping to provide an environment where open discussion and sharing of opinions formed part of the colearning culture. This led to the group having the confidence to take lead positions later in the project such as in making a film, speaking at conferences and sharing their opinions with clinically qualified co-learners. 10
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Promoting patients as leaders, a new movement which started in the voluntary sector, is gaining momentum in health care. It describes the qualities of a patient leader as being similar to a strategic leader with a capacity for self-leadership, the ability to focus on
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solutions and willingness to value and work with others (Doughty and Gilbert 2012).
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Researchers predict seeing patient leaders working alongside health care leaders in the
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future to create service improvement through co-production (King’s Fund 2013). This mirrors the way in which patient representatives undertook their role in this study. The patient representatives described how they entered into a study which was not just about watching the health care professionals learn. It was about engaging genuinely in a process which they
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fully understood and in which they were trusted to lead in teaching others about involving
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service users in service improvement, co-production and co-learning.
Service users in this study described the good, the fair and the poor, the frustration and delight, the regret and the anger, the togetherness and the surprise. They learnt, they benefitted, they felt equal and they were valued. They were outsider and insider, and they
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began to see things in a different light. They tried hard and sometimes felt inadequate. One
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of the most important things for them was the fact that they were listened to. Sharing a learning journey with colleagues from their practice team and the outcomes of their
knowledge.
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endeavours led to self-development, practice improvement and co-production of new
The co-learning model is proposed as a guiding framework for health care professionals,
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researchers and educators for use in planning and undertaking service user involvement when their role is that of co-learner. It outlines the features for service users that can influence their experience and which they identified as important to them. Service users who are well informed and understand their role can be expected to contribute to a study in ways that they feel comfortable and in ways that they understand can satisfy the study aims for service user involvement. If they are well supported and nurtured through their experience this may benefit the study by drawing upon lived experiences to inform others about the patient experience. Study contexts will differ, not all components of the co-learning model will always be required or work but this model can be adapted to the context.
The purpose of this study was to gain insight into the service user experience by exploring the experiences of health service users engaged in a specific research project. It explored the experience of a group of patient representatives in their co-learning role. The findings were presented as themes which yielded insight and held within them several key concepts 11
ACCEPTED MANUSCRIPT which cohere to form a model for future successful co-learning (Worswick 2013). A model evolved through on-going analysis of the study findings and their interpretations and is proposed as a framework for a co-learning partnership which could be applied in other health settings. Grounded in the data from this study the model offers sound proposals for
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others who plan to work with service users and it highlights shortfalls which could be avoided
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to optimise the service user experience.
The tools used to gain these insights were interviews, research records, learning material and a pragmatic approach towards exploring the service user experience, analysing a variety of types of data through trying various methods and exploring patient representatives’
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experiences through semi-structured interviews. Specifically designed strategies for data
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collection, data management and data analysis guided the research processes.
CONCLUSION
This robust research study engaged with people who endured difficulties in their healthcare
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experiences and who wanted to make a difference for others. Outlining a clear purpose
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meant this study achieved what it set out to do. The question was not about involving people in research or about what impact they had on the outcome. This research wanted to know
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what people go through when they get involved as service users. This study has illustrated that service users require clarity about their role and efforts need to be made in recruiting and preparing them for their experience of service user involvement. They also need ongoing support in their partnership role. A model for co-learning emerged from the study
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which draws upon these key features. The uniqueness of this co-learning model is that its source is from the service user perspective. This is also a limitation and further research should be undertaken to draw upon the persepctives of health care professional and researchers in relation to co-learning in order to build upon the current model.
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ACCEPTED MANUSCRIPT Rutherford, G., 2011. Peeling the layers: A grounded theory of interprofessional co-learning with residents of a homeless shelter. Journal of Interprofessional Care 25 (5), 352-358.
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A shared learning experience
No hierarchy Neutral Secure Open Safe
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Co-learning partnership
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Commitment Respect Equality Honesty Passion
Influencing change
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The individual approach
Environment
Clear aim and purpose
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Active listening
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Making time
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A MODEL FOR CO-LEARNING
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Figure 1. Outline model for co-learning to influence change
Articulated realistic expectations
Clear communication
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Introductory and on-going support
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Key to components Shared learning experience – partnership Environment Preparation
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ACCEPTED MANUSCRIPT Figure 2. Concepts for co-learning
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Concepts of the co-learning model
Preparation - the support system for the model is made up of crucial ingredients for effective
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co-learning and these are about the preparation that is required; making time and active listening, having a clear aim and purpose and clearly articulated and realistic expectations. Clear communication processes and the provision of introductory and on-going support are
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also required in preparing for and facilitating co-learning.
Environment - creating the right environment occurs by encouraging shared values and
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attitudes and creating a setting where there is no hierarchy and participants feel safe and secure.
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Partnership - a shared learning experience can then evolve from what each individual
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influencing change.
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learner brings. The partnership working which results can lead participants towards
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ACCEPTED MANUSCRIPT Figure 3. Progression of the partnership learning experience
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Creating a story Changed beliefs Changed behaviour Changed perceptions Renewed understanding Common goals Co-learning Leading the change
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Sharing stories Sharing beliefs Sharing behaviour Sharing perceptions Sharing understanding Sharing goals Sharing learning Making change
Influencing change
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Individual story Individual beliefs Individual behaviour Individual perceptions Individual understanding Individual goals Learning styles Readiness to change
A shared learning experience
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The individual approach
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ACCEPTED MANUSCRIPT Highlights
Contribution to knowledge development within this theme
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The experience of service user involvement from the service user perspective Examples of good practice
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Research planning and design, recruitment of service users and managing expectations require careful planning
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