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Background: Developing diversity-responsive healthcare systems calls for inclusive public and patient involvement policy and practice. Although several studies show that migrants and ethnic minorities are amongst the groups least involved in health participatory spaces, few efforts have been made to assess whether policy on public and patient involvement in healthcare governance is sensitive to diversity. This paper addresses this question. Methods: Migrant health experts from 40 countries (including the EU28 and EFTA) completed a questionnaire jointly developed by members of COST Action IS1103, the International Organization for Migration and the Migrant Integration Policy Index, in 2014-2015. The 24-item questionnaire included two questions about policy on the involvement of migrants in health policy-making and care provision, respectively. Results: Preliminary results show that 60% of the countries surveyed have not formulated policy enabling migrants' involvement in health policy-making. In the countries where such policy exists, migrants participate through one-off consultation exercises, i.e. none of the countries surveyed promote migrants' structured cooperation in policy-making (e.g. through advisory boards or regular reviews of legislation, services or outcomes). Concerning policy on involvement in healthcare provision, 28% of the countries promote migrants' participation in information development and dissemination, 28% in service delivery, 13% in service planning, management and evaluation, 18% in research and 10% in mediation between services and the community. Conclusions: Investment in diversity-sensitive policy on public and patient involvement in health care governance is limited. There is a gap between policy and practice, raising concerns about the potentially negative consequences of low migrant involvement in the design and implementation of healthcare policies and programmes seeking to address their needs. Message: Developing diversity-responsive healthcare systems requires inclusive public and patient involvement policy Few countries have invested in making their public involvement policy sensitive to diversity. ; info:eu-repo/semantics/publishedVersion

This poster aims to highlight the impact of a public/patient group (PPG) involved in two large programmes that are researching bowel cancer using routine, linked administrative datasets in England and Scotland.
The PPG consists of ten independent patients or carers who have lived, or shared, experiences of bowel cancer. Members are involved in the full life cycle of individual research projects from project development, to research in progress and onto dissemination of the work once published. They are actively involved in shaping the strategic direction of the programmes and are a key part of the data access process. The group meets once a month and acts as a 'critical friend' to the researchers.
The PPG have produced over 18 plain language summaries to ensure accessibility of the programmes' research to everyone and that it reaches those directly affected by bowel cancer. They have produced four publications including one Editorial, one Opinion piece and two co-authored manuscripts. The group have also co-developed patient information sheets and consent forms with clinicians that are now used in various cancer centres across Yorkshire. Furthermore, one of the PPG members co-presenting a webinar, which highlighted their involvement in developing a unique linked bowel cancer dataset to an international audience of over 100 people.
The PPG has demonstrated that involving the public and patients in the development of data linkage research is hugely beneficial. Their experience and knowledge shapes research that ultimately improves care. The success of our PPG is an exemplar for embedding patients and public involvement in research.

Over the last three years, there has been a major shift in healthcare policy within England. This has radically altered the relationship between General Practitioners (GPs) and patients. This article examines the role of patient and public involvement within the National Health Service (NHS) from the perspective of volunteers and health practitioners. The aim of the study is to explore how different models of patient and public involvement (PPI) are characterised through ideological perspectives which construct the goals and motivations of service users and health practitioners. This article draws on data from a small qualitative study of 16 participants analysing different narratives and experiences of patient and public involvement within the North East of England. The study analyses data from health professionals, including General Practitioners and health managers, and patient volunteers who make up part of a range of different health advisory groups in the NHS. Whilst all respondents agree about the importance of public involvement to assist localised NHS healthcare, it should be noted that what is meant by patient and public involvement in this study is somewhat unclear for people involved in the process. The research concludes by illustrating how practitioners' and volunteers' interpretations of patient and public involvement diverge in terms of their expressed motivations, aims, goals and expectations.

INTRODUCTION: Public and patient involvement (PPI) in healthcare decisions at the health system-level (macro-level) has become increasingly important during recent years. Existing evidence indicates that PPI increase patient centredness and the democracy of healthcare decisions as well as patients' trust and acceptance of these decisions. However, different methods for PPI exist, and an overview of the outcomes and influential contextual factors has not yet been conducted. Therefore, this scoping review aims to provide an overview of the different methods used for PPI in health system decisionmaking and the reported outcomes and contextual factors for these methods. METHODS AND ANALYSIS: The structure of this protocol is guided by the advanced scoping studies framework of Arksey and O' Malley, developed by Levac, Colquhoun and O'Brien, and the PRISMA-ScR Statement. We will systematically search electronic databases (MEDLINE, Cochrane Library, Scopus, CINAHL, PDQ-Evidence, Web of Science and PsycINFO) for peer-reviewed literature and screen the reference lists of included studies. Additionally, we will search for relevant grey literature and consult experts from the field to identify further information. Studies focusing on PPI in the context of health policy decision-making at the macro-level will be eligible for full-text screening. Studies focusing on decisions at the individual treatment-level (micro-level) and the organisational-level (mesolevel) as well as those dealing with PPI in health research will be excluded. A qualitative analysis will dissect how the included studies define PPI and its desirable outcomes, the achieved outcomes and reported contextual factors. ETHICS AND DISSEMINATION: We will present the results at relevant conferences and in an open-access journal. Additionally, we will share them with the experts involved in the research process and consider ways in which to transfer the findings into practice. As only secondary and previously published information will be used, ethical approval ...

Providing information to implement a new core healthcare requirement - patient involvement Including real case scenarios to illustrate the principles of effective PPI Following the unique Toolkit series format of flowcharts and layouts that guide the reader through each section.

This handbook is written for patients and members of the public who want to understand more about the approaches, methods and language used by health-services researchers. Patient and public involvement (PPI) in research is now a requirement of most major health-research programmes, and this book is designed to equip these individuals with the knowledge and skills necessary for meaningful participation. Edited by award-winning mental-health researchers, the book has been produced in partnership with mental-health-service users and carers with experience of research involvement. It includes personal reflections from these individuals alongside detailed information on quantitative, qualitative and health-economics research methods, and comprehensively covers all the basics needed for large-scale health research projects: systematic reviews; research design and analysis using both qualitative and quantitative approaches; health economics; research ethics; impact and dissemination. This book was developed during a five-year research programme funded by the UK's National Institute for Health Research (NIHR) called Enhancing the Quality of User Involved Care Planning in Mental Health Services (EQUIP). The handbook clearly outlines research practices, and gives an insight into how public and patient representatives can be involved in them and shape decisions. Each chapter ends with a reflective exercise, and there are also some suggested sources of additional reading. People who get involved in health research as experts from experience now have a textbook to support their research involvement journey.

1 Understanding the research process -- Mr Andrew Grundy 2 Evidence synthesis and critical appraisal -- Dr Kelly Rushton and Dr Owen Price3 Quantitative designs -- Dr Owen Price and Prof Karina Lovell4 Quantitative analysis -- Prof Patrick Callaghan and Dr Penny Bee5 The design and evaluation of measurement scales -- Prof Patrick Callaghan6 Qualitative designs -- Dr Helen Brooks, Prof Anne Rogers and Dr Penny Bee7 Qualitative analysis -- Dr Helen Brooks, Prof Anne Rogers and Dr Penny Bee8 Health economics -- Prof Linda Davies and Ms Gemma Shields9 Research governance and ethics -- Dr Owen Price and Ms Lauren Walker10 Research dissemination -- Dr Penny Bee and Dr Helen Brooks

Background All professions in surgical care have a responsibility to include patients in their health care. By Swedish law, all care should be done in dialogue with the patient. The essential part of health care is the meeting between patient and healthcare professional. In the interaction, a decision can be made, and needs can be identified to a safer care. Previous studies on patient participation have focussed on patients perspectives in surgical care, but there is a paucity of studies about the personnels perspective of estimated patient involvement in surgical care. Aim The aim of this study was to identify and describe healthcare personnels view and behaviour regarding patient involvement in surgical care. Method A quantitative study with various professions was conducted. A validated questionnaire was used, remaining questions grouped under following areas: patient involvement, acute phase, hospital time, discharge phase and questions on employment and workplace. Results A total of 140 questionnaires were sent out to a surgical clinic in Sweden, and 102 questionnaires were answered. All professionals stated that clear information is an important part of patient involvement in surgical care. Statistically significant differences existed between the professions in the subscale information. Physicians rated their information higher than the Registered Nurses (p = 0.005) and the practical nurses did (p = 0.001). Hindrances to involving patients were lack of time and other priority tasks. Conclusions Professionals in surgical care graded information to be the most important thing for patient involvement. Participation in important decisions, including the possibility to express personal views and ask questions, is important factors for patient involvement. Barriers against patient involvement are lack of time and prioritisation of other work activities. ; Funding Agencies|Forskningsradet i Sydostra Sverige [FORSS-862001]

Background: Patient and public involvement (PPI) in health and social care policy, service decision-making and research are presented as good practice in England. Yet the explicit rationale for PPI and how it is positioned within the literature, policy and practice remain confused, in particular, in relation to Volunteer Involvement (VI). In health and social care, PPI and VI are managed and valued as conceptually distinct, yet the discourses in their policy and practice documents treat them as closely related in fundamental ways. Objective: Compare and critically evaluate discourses framing PPI and VI within English health and social care. Design: A critical discourse approach was used to explore the accounts of PPI and VI in policy. These accounts were then compared and contrasted with personal accounts of volunteering in health and social care settings. Results: Twenty documents from key national health and social care bodies were discursively examined in terms of their framing PPI and VI. A narrative disconnect between the two was repeatedly confirmed. This finding contrasted with an analysis of personal accounts of VI which displayed VI as a form of PPI. Conclusion: There is a disconnect between language, narratives and practice in PPI and in VI which may have direct consequences for policy and practice. Recognising and managing it can offer innovative ways of enabling volunteers to be involved across health and social care settings, ensuring the experiential value added by volunteers' service contributions, to be recognised so that their democratic participation may be seen to shape services.

BACKGROUND: Patient and public involvement (PPI) in health and social care policy, service decision‐making and research are presented as good practice in England. Yet the explicit rationale for PPI and how it is positioned within the literature, policy and practice remain confused, in particular, in relation to Volunteer Involvement (VI). In health and social care, PPI and VI are managed and valued as conceptually distinct, yet the discourses in their policy and practice documents treat them as closely related in fundamental ways. OBJECTIVE: Compare and critically evaluate discourses framing PPI and VI within English health and social care. DESIGN: A critical discourse approach was used to explore the accounts of PPI and VI in policy. These accounts were then compared and contrasted with personal accounts of volunteering in health and social care settings. RESULTS: Twenty documents from key national health and social care bodies were discursively examined in terms of their framing PPI and VI. A narrative disconnect between the two was repeatedly confirmed. This finding contrasted with an analysis of personal accounts of VI which displayed VI as a form of PPI. CONCLUSION: There is a disconnect between language, narratives and practice in PPI and in VI which may have direct consequences for policy and practice. Recognising and managing it can offer innovative ways of enabling volunteers to be involved across health and social care settings, ensuring the experiential value added by volunteers' service contributions, to be recognised so that their democratic participation may be seen to shape services.

Contemporary health policy and funding bodies are placing increasing emphasis on patient and public involvement (PPI) in healthcare and health research, advocating PPI in all stages of the research process. Currently, however, there is limited empirical evidence critiquing different approaches to PPI or exploring its associated benefits and challenges. Without this information researchers and patient/public representatives cannot make informed decisions about best practice. The principal aim of this thesis was to generate a detailed understanding of the implementation of PPI in health research. To accomplish this broad aim, I focused on a specific health condition, epilepsy, and the research structures underlying health research in the UK, namely, research networks. I achieved this using a multi-sited, ethnographic approach, incorporating multiple qualitative data collection methods, including 47 interviews, 35 observations, fieldnotes and document analysis. My in-depth thematic analysis of the data found that PPI is conceptualised in terms of 'meaningful' and 'tokenistic' involvement by those engaged in the process, rather than how it is depicted in the current models of involvement. Having first explored these terms I identified five components that can help to ensure that PPI is meaningful and not tokenistic. Having compared and contrasted multiple approaches to PPI I conclude that there is not one single 'best approach' for implementing PPI. Rather, to achieve high 'quality' PPI there is a need to incorporate seven methodological factors that overarch approaches and ensure that there is an alignment of approach and purpose. Both the professionals and the patient/ public representatives within my research appeared to be highly aware of the moral and political motivations of PPI, but were primarily motivated by pragmatic or consequentialist reasons. Professionals were motivated almost exclusively by the goal of improving the applicability or relevance of the research. This goal was important for representatives too but they were also motivated by a range of personal reasons, including the wish to feel they were making a difference; the opportunity to learn about epilepsy and epilepsy research; and the opportunity to interact with others. The perceived benefits of PPI were also identified and discussed in depth, and appeared to be largely congruent with those reported in the literature. However, my work has identified some challenges and barriers around PPI that have not previously been explored including: adverse emotional effects; organisational practicalities; concerns about 'representativeness' and 'tokenism'; the 'blurring' of roles and the erosion of patient-clinician boundaries. I conclude by recommending that there should be an increased focus on appropriate, 'meaningful', involvement rather than endeavouring to implement PPI in all stages of the research process, as currently advocated in policy documents. The insights into the challenges of PPI that my work has provided will allow them to be addressed from the outset, improving the PPI experience and consequently the likelihood of PPI being successfully implemented.

This dissertation focuses on the mechanisms, monitoring and management of patient and public involvement in hospital quality improvement (QI) interventions. Findings from a literature review generated an initial programme theory (PT) on active patient involvement in healthcare QI interventions (Paper 1). Empirical studies were also undertaken in order to describe what was actually happening in the hospital QI teams and what patients and professionals experience influence their joint involvement (Paper 2), and to compare hospital leaders' and managers' experiences of managing QI interventions involving patients and the public (Paper 3). Finally, it was studied how patient-reported measures stimulate patient involvement in QI interventions in practice (Paper 4). The research had a qualitative design. The approach was descriptive and comparative, and the studies were carried out prospectively. Data were collected in two hospital organisations in Sweden and in one hospital organisation in the Netherlands. Data collection methods were a literature search (Paper 1), interviews and field observations (Paper 2 and 3) and data collection meetings (Paper 4). Altogether, 93 team meetings and meetings between the team leaders and management were attended and a total of 20 days of study visits with different forms of meetings were made. Twelve patients, 12 healthcare professionals and 17 and 8 hospital leaders and managers, respectively, participated in the interviews and data collection meetings. Realist synthesis was used to formulate the initial PT (Paper 1). Constructivist grounded theory was used to analyse and describe what was happening in the QI teams and how it was experienced by the team members (Paper 2). To compare hospital leaders' and managers' different, contextual meanings in Sweden and the Netherlands, the reflexive thematic analysis informed by critical realism was used (Paper 3). To order, manage and map data from 31 examples of local QI interventions associated to patient-reported measures, the framework method was used (Paper 4). The results formulate a generic PT on the mechanisms, monitoring and management perspectives of co-produced QI interventions in hospital services where patients and the public are involved. The PT provides a hypothesis on the various mechanisms at play and outcomes obtained at the different levels of hospital organisations in the process. It is argued that focus should be on experiences, interaction, relationships and dialogue, integration of context, and the matching of hospital resources to patient and public demands and needs. Subsequently, the outcome will be the resources and reasoning interplay resulting in actions and processes, experiences and knowledge, 'product' benefits, emotions, judgements and motivations. Monitoring constitutes an important feedback loop to enable such learnings. The PT aligns the perspectives of the clinical microsystem, improvement science and the service-dominant logic, and has a potential to explain how patient and public involvement in QI interventions might work.

Potilaiden ja kansalaisten osallisuus on noussut terveyspoliittiselle agendalle useassa maassa, Suomi mukaan lukien. Terveydenhuollon markkinoituminen on vahvistanut ajatusta palvelujen käyttäjistä asiakkaina, joilla on oikeus tehdä valintoja ja esittää näkemyksiään terveyspalveluista. Osallisuutta kuvataan myös tapana demokratisoida yhteiskunnallista päätöksentekoa sekä parantaa palvelujen laatua ja saatavuutta. Vaarana on kuitenkin se, että käytännön tasolla osallistuminen jää pinnalliseksi ja merkityksettömäksi. Osallisuudesta puhuttaessa viitataan potilaiden ja kansalaisten – eli maallikoiden – mahdollisuuksiin vaikuttaa terveyspalvelujen suunnitteluun, kehittämiseen, tuottamiseen ja niitä koskevaan tutkimukseen. Osallisuutta voidaan toteuttaa suorien ja epäsuorien menetelmien kautta sekä yhteiskunnallisella/poliittisella, palvelujärjestelmän että hoitosuhteen tasoilla. Tässä tutkimuksessa sivutaan politiikan ja hoitosuhteen tasoilla tapahtuvaa osallisuutta, mutta pääpaino on suomalaisessa terveyspolitiikassa ja terveydenhuoltojärjestelmässä tapahtuneissa muutoksissa, joiden myötä maallikkoasiantuntijoista ja heidän kokemusperäisestä tiedostaan on tullut osa palvelujen kehittämistä ja tuotantoa. Tarkastelen osallisuuden mahdollisuuksia ja haasteita terveyspolitiikan, maallikko-osallistujien sekä kolmannen sektorin organisaatioiden näkökulmista käyttämällä esimerkkejä syövänhoidossa sekä mielenterveyspalveluissa tapahtuvasta osallisuudesta. Tutkimusmateriaalit koostuvat kansallisista politiikkadokumenteista (n=7) sekä yksilöhaastatteluista (n=27) kokemusasiantuntijoiden, vertaistukihenkilöiden ja järjestöjen edustajien kanssa. Analysoin materiaaleja useiden laadullisten menetelmien avulla, keskittyen erityisesti maallikko-osallistujien asemointiin; palvelutason osallisuuteen liittyviin jännitteisiin, esteisiin ja hyötyihin; sekä kokemustiedon rakentumiseen ja käyttötapoihin. Tutkimustulokset osoittavat, kuinka myönteisestä poliittisesta retoriikasta huolimatta, osallisuutta tulkitaan usein kapea-alaisesti. Elettyjä sairaus- ja palvelunkäyttökokemuksia omaaville maallikoille on toki luotu uusia mahdollisuuksia vaikuttaa terveydenhuollon kehittämiseen ja tuotantoon. He joutuvat kuitenkin kohtaamaan monia esteitä, joihin lukeutuvat ambivalentti poliittinen ohjaus, epäselvät rooliodotukset, vähättelevät asenteet ja tuen puute. Osallistumisesta on tehty helpompaa aktiivisille ja 'osallistumisvalmiille' yksilöille, mikä voi osaltaan rajoittaa terveydenhuollon kehittämisessä käytettävien kokemusten moninaisuutta. Maallikko-osallistujat pyrkivät legitimoimaan omaa asiantuntijuuttaan terveydenhuollossa ja asemoimaan itsensä terveydenhuollon ammattilaisten ja potilaiden välimaastoon. Heidän omaamansa kokemustietoa ei usein arvoteta samalle tasolle kliinisen/ammatillisen tiedon kanssa. Sitä kuitenkin käytetään niin potilaiden tukemiseen kuin osana ammattilaisten koulutusta. Lisäksi sen avulla pyritään luomaan moniulotteisempi kuva sairausarjesta ja hoitokokemuksista. Kokemustiedon integroiminen osaksi palvelujen kehittämistä ja tuotantoa voi johtaa laajamittaisiin muutoksiin, mutta ainakin tällä hetkellä terveydenhuollossa käytettävä kokemustieto käy läpi eräänlaisen suodatusprosessin. Osallisuuteen liittyvien esteiden purkaminen vaatii vahvempaa institutionaalista sitoutumista, muutosvalmiutta ja tavoitteiden selkeyttämistä. Poliittisten toimijoiden ja terveyspalveluiden tulisi pohtia kuinka kansalaisten sekä haavoittuvammassa asemassa olevien yksilöiden ja ryhmien osallisuutta voisi vahvistaa. Terveydenhuollon ja terveyspalveluissa työskentelevien ammattilaisten tulisi pyrkiä ymmärtämään kokemustiedon rajoituksia ja käyttömahdollisuuksia sekä palvelu- että yhteiskunnallisella tasolla. ; Patient and public involvement (PPI) has become an established part of the health policy agenda in several countries, including Finland. It is founded upon various rationales ranging from democratisation of decision-making to increased healthcare consumerism. Although, involving patients and the public has the potential to strengthen the acceptability of healthcare decision-making and improve service accessibility, its practical implementations can also be tokenistic and inconsequential. In practical terms, involvement refers to the inclusion of patients and members of the public – i.e. lay participants – in all aspects of healthcare related planning, development, delivery, and research. Involvement can be implemented through various direct and indirect methods that occur on societal/political, service, and individual/treatment levels. Whilst this study touches upon the political and individual levels, the main focus will be on the more recent developments in Finnish health policies and services, which bring brand new expertise into healthcare development and delivery in the form of lay expertise and experiential knowledge. In this study, I delve deeper into the potentials and pitfalls of patient and public involvement by exploring it from the policy, lay participant and third sector organisation perspectives, with examples drawn from involvement occurring within cancer and mental health services. The materials consist of national health policy documents (n=7) and interviews with experts by experience, peer support workers and organisational representatives (n=27). The materials are analysed using a variety of qualitative methods to gain insights into the positions constructed for and by lay participants; to identify tensions, barriers, and benefits of service level involvement; and to explore the construction and applications of experiential knowledge. The results indicate that although involvement is supported by the policy rhetoric, it is often narrowly interpreted. People with lived experiences and the organisations representing them have new channels through which they can influence service development and delivery. However, they also face significant barriers that relate to ambivalent policy guidance, lack of role clarity, dismissive attitudes and structures that make involvement much easier of groups and individuals that do not require much facilitation. In practice, involvement is made easier for active and 'participation ready' individuals, which can limit the diversity of the experiences that get through to health services. Lay participants attempt to establish themselves as experts, positioned between health professionals and patients. Although their experiential knowledge is rarely afforded equal value to that of clinical/professional knowledge, it is being used in involvement activities to relate and support patients, educate professionals and provide a more complex and rounded view of what it is like to live with a condition, receive treatment and navigate care services. The results suggest that experiential knowledge has transformative potential, although certain restrictions and filters are imposed upon it during its use and communication through involvement activities. In order to overcome some of the barriers outlined in this study, there needs to be more institutional commitment towards involvement, willingness to adapt and clarity over the aims and rationales. Additionally, it is important for policy makers and health services to think of ways to engage the public as well as those who are not able to engage without facilitation. Health services and professionals should attempt to understand both the limitations and potentials of experiential knowledge within healthcare and the wider society.