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Background: The implementation science literature acknowledges a need for engagement of key stakeholders when designing, delivering and evaluating implementation work. To date, the literature reports minimal or focused stakeholder engagement, where stakeholders are engaged in either barrier identification and/or barrier prioritisation. This paper begins to answer calls from the literature for the development of tools and guidance to support comprehensive stakeholder engagement in implementation research and practice. The paper describes the systematic development of the Implementation‐STakeholder Engagement Model (I‐STEM) in the context of an international, large‐scale empirical implementation study (ImpleMentAll) aimed at evaluating the effectiveness of a tailored implementation toolkit. The I‐STEM is a sensitising tool that defines key considerations and activities for undertaking stakeholder engagement activities across an implementation process. Methods: In‐depth, semistructured interviews and observations were conducted with implementers who were tailoring implementation strategies to integrate and embed internet‐based cognitive behavioural therapy (iCBT) services in 12 routine mental health care organisations in nine countries in Europe and Australia. The analytical process was informed by principles of first‐ and third‐generation Grounded Theory, including constant comparative method. Results: We conducted 55 interviews and observed 19 implementation‐related activities (e.g., team meetings and technical support calls). The final outcome of our analysis is expressed in an initial version of the I‐STEM, consisting of five interrelated concepts: engagement objectives, stakeholder mapping, engagement approaches, engagement qualities and engagement outcomes. Engagement objectives are goals that implementers plan to achieve by working with stakeholders in the implementation process. Stakeholder mapping involves identifying a range of organisations, groups or people who may be instrumental in achieving the engagement objectives. Engagement approaches define the type of work that is undertaken with stakeholders to achieve the engagement objectives. Engagement qualities define the logistics of the engagement approach. Lastly, every engagement activity may result in a range of engagement outcomes. Conclusion: The I‐STEM represents potential avenues for substantial stakeholder engagement activity across key phases of an implementation process. It provides a conceptual model for the planning, delivery, evaluation and reporting of stakeholder engagement activities. The I‐STEM is nonprescriptive and highlights the importance of a flexible, iterative approach to stakeholder engagement. It is developmental and will require application and validation across a range of implementation activities. Patient or Public Contribution: Patient contribution to ImpleMentAll trial was facilitated by GAMIAN‐Europe at all stages—from grant development to dissemination. GAMIAN‐Europe brings together a wide variety of patient representation organisations (local, regional and national) from almost all European countries. GAMIAN‐Europe was involved in pilot testing the ItFits‐toolkit and provided their views on the various aspects, including stakeholder engagement. Patients were also represented in the external advisory board providing support and advice on the design, conduct and interpretation of the wider project, including the development of the ItFits‐toolkit. Trial registration: ClinicalTrials.gov NCT03652883. Retrospectively registered on 29 August 2018. [ABSTRACT FROM AUTHOR]

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. Setting and participants: Consultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries. Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. Results: The results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. Discussion and conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement. [ABSTRACT FROM AUTHOR]

Background and objective The spread of self-care holds the promise of containing chronic illness burden. Falling within the framework of a FP7 collaborative research project, this paper reports the views of key informants from six countries regarding who the main stakeholders are at different levels in the support system for self-care for patients with chronic illness ( SSSC) and how they accomplish their role and collaborate. Methods 90 Interviews with purposefully selected key informants from Bulgaria, Greece, the Netherlands, Norway, Spain and United Kingdom were conducted. Interviews involved government and local authorities, politicians, academics, health professionals and private sector representatives. Interviewers followed an expert opinion-based guide. Analysis involved a cross-country examination with thematic analysis and framework method techniques. Results Key informants described the ideal SSSC as inclusive, interdependent and patient-centred. The following main stakeholders in SSSC were identified: patients, governments, health-care professionals, associations, private companies and the media. In the current SSSCs, collaboration among stakeholders within and across different levels was said to be lacking. Patients were seen as playing a passive subordinate role based on the following: their own attitudes; the paternalistic and medicalized attitudes of the health-care professionals; their misrepresentation by patient associations; and their exposure to the damaging influences of media and industries. Conclusions Making SSSC patient-centred constitutes the greatest challenge for European authorities. Strategies must be revised for promoting patient participation. They should undergo changes so as to promote industry and media social responsibility and patient association advocacy capacity. [ABSTRACT FROM AUTHOR]

Background The material practices which researchers use in research partnerships may enable or constrain the nature of engagement with stakeholder groups. Participatory learning and action ( PLA) research approaches show promise, but there has been no detailed analysis of stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis. Objectives To explore stakeholders' and researchers' experiences of PLA techniques for data generation and co-analysis. Design The EU RESTORE implementation science project employed a participatory approach to investigate and support the implementation of guidelines and training initiatives ( GTIs) to enhance communication in cross-cultural primary care consultations. We developed a purposeful sample of 78 stakeholders (migrants, general practice staff, community interpreters, service providers, service planners) from primary care settings in Austria, England, Greece, Ireland and The Netherlands. We used speed evaluations and participatory evaluations to explore their experiences of two PLA techniques-Commentary Charts and Direct Ranking-which were intended to generate data for co-analysis by stakeholders about the GTIs under analysis. We evaluated 16 RESTORE researchers' experiences using interviews. We conducted thematic and content analysis of all evaluation data. Results PLA Commentary Charts and Direct Ranking techniques, with their visual, verbal and tangible nature and inherent analytical capabilities, were found to be powerful tools for involving stakeholders in a collaborative analysis of GTIs. Stakeholders had few negative experiences and numerous multifaceted positive experiences of meaningful engagement, which resonated with researchers' accounts. Conclusion PLA techniques and approaches are valuable as material practices in health research partnerships. [ABSTRACT FROM AUTHOR]

Background: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long‐term conditions such as Parkinson's disease. Objective: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. Methods: A mixed‐methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta‐ethnography approach was used to analyse and synthesize cross‐national findings. Results: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Conclusions: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient or Public Contribution: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings. [ABSTRACT FROM AUTHOR]

Background Pandemics of new and emerging infectious diseases are unpredictable, recurrent events that rapidly threaten global health and security. We aimed to identify public views regarding provision of information and consent to participate in primary and critical care clinical research during a future influenza-like illness pandemic. Methods Descriptive-interpretive qualitative study, using focus groups (n = 10) and semi-structured interviews (n = 16), with 80 members of the public (>18 years) in Belgium, Spain, Poland and the UK. Local qualitative researchers followed a scenario-based topic guide to collect data. Data were transcribed verbatim, translated into English and subject to framework analysis. Results Public understandings of pandemics were shaped by personal factors (illness during the previous H1N1 pandemic, experience of life-threatening illness) and social factors (historical references, media, public health information). Informants appreciated safeguards provided by ethically robust research procedures, but current enrolment procedures were seen as a barrier. They proposed simplified enrolment processes for higher risk research and consent waiver for certain types of low-risk research. Decision making about research participation was influenced by contextual, research and personal factors. Informants generally either carefully weighed up various approaches to research participation or responded instinctively. They supported the principle of using routinely collected, anonymized clinical biological samples for research without explicit consent, but regarded this as less acceptable if researchers were motivated primarily by commercial gain. Conclusions This bottom-up approach to ascertaining public views on pandemic clinical research has identified support for more proportionate research protection procedures for publically funded, low-risk studies. [ABSTRACT FROM AUTHOR]

Background: Subjective survival probabilities (SSPs) are considered relevant in relation to lifestyle as lifestyle improvements may improve health and lower mortality risk. Objective: To study individuals' SSP in a population of elderly (i.e. 60 years and older) from 15 European countries. Methods: Data from the second wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were used. Individuals were asked about their chances to live up to age [T] or more. These SSPs were related to general characteristics, health and lifestyle. In addition, cross‐country comparisons were made. The validity of the probabilistic elicitation format used for collecting SSPs was also addressed. Results: The average subjective probability of surviving the next 9–15 years was around 57%. Mean SSPs varied significantly across age, with lower means at higher ages. Cross‐country comparisons showed lowest mean in the Czech Republic (42%) and the highest in Denmark (64%). SSPs correlated with socio‐demographic, socio‐economic and also strongly with (objective) health characteristics except for obesity. Smokers reported significantly lower SSPs compared to non‐smokers, but no difference was found between non‐smokers and quitters. Excessive alcohol consumers reported significantly higher SSPs than moderate consumers and abstainers, but this only held for female excessive drinkers. Physical inactivity was negatively associated with SSPs, but this relation was attenuated at higher ages. In this context, important cross‐country differences were found. Conclusions: Subjective survival probabilities are informative and relevant in relation to lifestyle decisions and can be validly obtained in elder people. The results from this study provide interesting implications for health policy, health communication strategies and future research. [ABSTRACT FROM AUTHOR]

Background: Although the literature offers various theoretical explanations for the existence of informal patient payments, empirical research has mostly focused on socio‐demographic features as determinants of these payments. The role of health‐care users’ perceptions on informal payments are rarely taken into account especially in multicountry surveys. Objective: Our aim is to examine the association between informal payments for health‐care services and perceptions of health‐care consumers about paying informally as well as socio‐demographic characteristics. Design: We use data from a multicountry quantitative empirical research conducted in 2010. Setting and participants: A national representative sample is drawn in six Central and Eastern European countries – Bulgaria, Hungary, Lithuania, Poland, Romania and Ukraine. In each country, about 1000 respondents are interviewed. Main variables studied: Data related to informal payments for health‐care services consumed during the preceding 12 months are analysed in addition to data on respondents’ perceptions about paying informally and socio‐demographic data. Results: Health‐care users in Bulgaria and Poland are less inclined to make informal payments, while health‐care users in Romania and Ukraine most often report such payments. The informal payment rates for Hungary and Lithuania fall between these two groups. In all six countries, individuals who feel uncomfortable when leaving the physician's office without a gratuity and who feel unable to refuse the request of medical staff to pay informally, more often make informal payments. Conclusions: Such consumers’ perceptions can undermine policy efforts to eradicate these payments; therefore, health policy measures should reinforce social resistance to informal payments. [ABSTRACT FROM AUTHOR]

The article presents the research that explores on the perspectives of African Americans and ethnic minority patients on the self-management of diabetes in Great Britain. The topics discussed include the barriers they experienced in managing their ailments and the importance of their insights in improving the healthcare services and policies.

Background Public involvement in health-care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain. Objectives To review the peer-reviewed empirical evidence on outcomes of public involvement in health-care policy. Methods We systematically searched Psych INFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings. Main results Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented. Conclusions Despite the growing body of work on public involvement in health-care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health-care policy process may be seen to be of intrinsic value. [ABSTRACT FROM AUTHOR]

Background Inspired by American examples, several European countries are now developing disease management programmes (DMPs) to improve the quality of care for patients with chronic diseases. Recently, questions have been raised whether the disease management approach is appropriate to respond to patient-defined needs. Objective In this article we consider the responsiveness of current European DMPs to patients' needs defined in terms of multimorbidity, functional and participation problems, and self-management. Method Information about existing DMPs was derived from a survey among country-experts. In addition, we made use of international scientific literature. Results Most European DMPs do not have a solid answer yet to the problem of multimorbidity. Methods of linking DMPs, building extra modules to deal with the most prevalent comorbidities and integration of case management principles are introduced. Rehabilitation, psychosocial and reintegration support are not included in all DMPs, and the involvement of the social environment of the patient is uncommon. Interventions tailored to the needs of specific social or cultural patient groups are mostly not available. Few DMPs provide access to individualized patient information to strengthen self-management, including active engagement in decision making. Conclusion To further improve the responsiveness of DMPs to patients' needs, we suggest to monitor 'patient relevant outcomes' that might be based on the ICF-model. To address the needs of patients with multimorbidity, we propose a generic comprehensive model, embedded in primary care. A goal-oriented approach provides the opportunity to prioritize goals that really matter to patients. [ABSTRACT FROM AUTHOR]