Applying Patient and Public Involvement in preclinical research: A co‐created scoping review

BackgroundPatient and Public Involvement (PPI) in research aims to improve the quality, relevance and appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence‐based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects.MethodsA scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfo and Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluation and (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects.ResultsNine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited.ConclusionAlthough currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers.Patient or Public ContributionThis study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5‐year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers and PPI facilitators collaborated as co‐authors on the conceptualization, execution and writing of this review, including refining the findings into the set of principles reported here.     

Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition

IntroductionAlthough Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in‐depth understanding of researchers’ and YPCC''s perspectives on meaningful impact.MethodsWe conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., ‘YPCC acquire new knowledge and skills’) based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact.ResultsFour distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC''s rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors.ConclusionThe results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact.Patient or Public ContributionAn adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC.     

The Role of Public Relations for Image Creating in Health Services: A Sample Patient Satisfaction Survey

This study discusses the role of public relations for image creating in health services. Hospitals require public relations activities to distinguish them from competitors, provide bidirectional communication between the society and the hospital, and assist to create of a strong hospital image and culture. A satisfaction survey was conducted on 264 patients who have received health services at Maltepe University Hospital. The research focused on how the Hospital's examination, care, catering and physical services; doctor and nurse politeness towards patients and patient relatives, their attitudes and behaviors; examination, check-in, bedding and discharge operations; public relations activities in and out of the hospital were perceived. Another subject of the study was the degree of recommendation of patients who have been served by the hospital's health services to prospective patients seeking treatment.     

Patient and public involvement cultures and the perceived impact in the vulnerable context of palliative care: A qualitative study

BackgroundCultural values are crucial to the practice and impact of patient and public involvement (PPI) in research.ObjectiveTo understand different PPI cultures among research teams and the impacts of PPI associated with each culture type.DesignA participatory action research design.Setting and participantsThe setting was 10 palliative care research projects. Seventeen patients and members of the public and 31 researchers participated.InterventionA programme consisting of four components: (1) training and coaching of patients and the public to prepare them for participation in research, (2) tailored coaching of the 10 research teams over 12‐18 months, (3) a community of practice, and (4) a qualitative evaluation.ResultsWe identified three cultures types: relationship cultures, task cultures, and control cultures. We identified four areas of impact: the project aim became more relevant to the target audience, methodological reliability increased, the research products were better able to reach the public, and the awareness increased, associated with behavioural changes, among researchers regarding PPI.DiscussionA relationship culture appears to be long‐lasting due to impacting the behaviours of the researchers during future projects. Different cultural types require different types of patients and researcher participants, assigned to different tasks.ConclusionsFurther research remains necessary to investigate the support required by researchers to enable relationship‐ and task‐oriented PPI cultures.Patient or public contributionPatient advocates and representatives contributed to our research team throughout the entire research process, as well as within the 10 implementation projects.     

Public Participation in the Process of Local Public Health Policy,Using Policy Network Analysis

Objectives:

To assess the current public participation in-local health policy and its implications through the analysis of policy networks in health center programs.

Methods:

We examined the decision-making process in sub-health center installations and the implementation process in metabolic syndrome management program cases in two districts (‘gu’s) of Seoul. Participants of the policy network were selected by the snowballing method and completed self-administered questionnaires. Actors, the interactions among actors, and the characteristics of the network were analyzed by Netminer.

Results:

The results showed that the public is not yet actively participating in the local public health policy processes of decision-making and implementation. In the decision-making process, most of the network actors were in the public sector, while the private sector was a minor actor and participated in only a limited number of issues after the major decisions were made. In the implementation process, the program was led by the health center, while other actors participated passively.

Conclusions:

Public participation in Korean public health policy is not yet well activated. Preliminary discussions with various stakeholders, including civil society, are needed before making important local public health policy decisions. In addition, efforts to include local institutions and residents in the implementation process with the public officials are necessary to improve the situation.     

Patient involvement in patient safety: what factors influence patient participation and engagement?

BACKGROUND: Patients can play an important role in improving patient safety by becoming actively involved in their health care. However, there is a paucity of empirical data on the extent to which patients take on such a role. In order to encourage patient participation in patient safety we first need to assess the full range of factors that may be implicated in such involvement. OBJECTIVE: To delineate factors that could affect the participation of the patient in quality and safety issues in their health care. METHOD: Literature review of patient involvement in health care, drawing from direct evidence (specifically from the safety context) and indirect evidence (extrapolated from treatment decision-making research and the wider patient involvement in health care literature); synthesis and conceptual framework developed, illustrating the known and putative factors that could affect the participation of the patient in safety issues in their health care. MAIN RESULTS: Five categories of factors emerged that could affect patient involvement in safety: patient-related (e.g. patients' demographic characteristics), illness-related (e.g. illness severity), health-care professional-related (e.g. health care professionals' knowledge and beliefs), health care setting-related (e.g. primary or secondary care), and task-related (e.g. whether the required patient safety behaviour challenges clinicians' clinical abilities). CONCLUSION: The potential for engaging patients in patient safety is considerable but further research is needed to examine the influences on patient involvement, the limits and the possible dangers. Patients can act as 'safety buffers' during their care but the responsibility for their safety must remain with the health care professionals.     

Patient and public involvement in health research from researchers' perspective

Background

Patient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)-trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT-trained researchers.

Method

Semi-structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis.

Results

Professional background and clinical experience from person-centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital.

Conclusion

Collaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations.

Patient or Public Contribution

Three public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.     

Patient Advice and Liaison Services: results of an audit survey in England

Objective  To assess the extent national standards for Patient Advice and Liaison Services (PALS) were achieved across England.
Context  PALS are an important element of patient and public involvement strategy in England. Seven national standards for PALS were identified. Previous research has not assessed PALS across all trust types in England.
Design  Audit survey as part of a mixed method 'realistic evaluation' in which regularities of context, mechanism and outcome are hypothesized and tested.
Setting and participants  PALS based in 570 NHS trusts in England between October and December 2005.
Main outcome measures  Self reported achievement against PALS national standards.
Results  Three hundred and thirty-six valid responses were received, a response rate of 65%. However because some PALS serve more than one trust, this represents an estimated 76% of trusts. Overall, PALS rated themselves highly against all the standards, though somewhat less highly against standard 2 (seamlessness across health and social care) and standard 6 (acting as a catalyst for culture change). There was a wide range of responses with regard to PALS budget, staffing and activity levels, and statistically significant associations between levels of funding and staffing and higher levels of performance.
Conclusions  The overall response rate was good so there can be a high degree of confidence in the reliability of the results. The results indicate the challenging context in which PALS are operating. Although the majority of PALS are single trust PALS, there is a high degree of variation in key mechanism factors such as budget and staffing.     

A survey and audit of the first ''Guides to Local Health Services'' produced by Primary Care Trusts in England

BACKGROUND: Providing more information for the public about the range and quality of health services is an important part of improving accountability, quality and public responsiveness. Most sources of information to date have failed to address the information needs of people about their local services. The launch in England in 2002 of a new publication, Guides to Local Health Services, was designed to address this deficiency. We conducted an audit of the first Guides, and surveyed those responsible for their production, in order to examine the Guides' development, content, presentation and dissemination, and to critique the purpose of the initiative. METHODS: A semi-structured questionnaire survey of those responsible for producing the Guides, and an audit of the Guides produced by Primary Care Trusts (PCTs). RESULTS: Most PCTs complied with central guidance about structure and content, but in meeting multiple requirements the Guides lost their clarity of purpose. The content was dominated by information relating to financial and strategic accountability. In producing the Guides, external consultation was limited, particularly with the public but also with local partnership providers of health and social care. The main issues were the lack of a clear focus for Guide information, the level of central direction, the short production lead times, difficulties with distribution, and the many competing demands being made on PCT resources. CONCLUSIONS: Guide content should be clearly focused on information that the public wants. Greater responsibility should be devolved to front line PCT staff to determine content in consultation with local users.     

Improving participation outcomes and interventions in neurodisability: co‐designing future research

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self‐care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self‐care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a ‘Menu of Interventions’ for personalized self‐care support; and (4) designed a before‐and‐after mixed methods feasibility study to evaluate the Menu with children and young people (0–12 years) and their parents and therapists.     

专利保护和公共健康:国家药物政策中的冲突与协调

药物专利保护能够有效地激励科技创新,然而,产业资本寻求利益最大化导致了产业资本诉求与公共健康问题无法避免的利益冲突,专利保护对于药物可及性的影响十分明显,两者的冲突只能进一步协调而不可能完全消失.在一个合理的专利制度体系下,会不断激励药物研发创新、改善人类生活质量.国家药物政策的一个重要作用就是通过协调机制增强药物的可及性.