scholarly journals Value, transparency, and inclusion: A values-based study of patient involvement in musculoskeletal research

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260617
Author(s):  
E. Bradshaw ◽  
K. Whale ◽  
A. Burston ◽  
V. Wylde ◽  
R. Gooberman-Hill
Keyword(s):  
Best Practice ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Unit ◽  
Healthcare Research ◽  
Value Systems ◽  
System Framework ◽  
Value System ◽  
Diversity And Inclusion ◽  
Framework Approach

Background Patient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school. Methods The study was conducted between October 2019 and January 2020 using Gradinger’s value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems. Results Twelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to ‘give back’ and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness. Conclusions Three areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.

scholarly journals Household medication safety practices during the COVID-19 pandemic: a descriptive qualitative study protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e044441
Author(s):  
Tamasine C Grimes ◽  
Sara Garfield ◽  
Dervla Kelly ◽  
Joan Cahill ◽  
Sam Cromie ◽  
...  
Keyword(s):  
Social Media ◽  
Qualitative Study ◽  
Medication Safety ◽  
Best Practice ◽  
Public Involvement ◽  
Comparative Method ◽  
Patient And Public Involvement ◽  
Safety Practices ◽  
Trinity College Dublin ◽  
Descriptive Qualitative

IntroductionThose who are staying at home and reducing contact with other people during the COVID-19 pandemic are likely to be at greater risk of medication-related problems than the general population. This study aims to explore household medication practices by and for this population, identify practices that benefit or jeopardise medication safety and develop best practice guidance about household medication safety practices during a pandemic, grounded in individual experiences.Methods and analysisThis is a descriptive qualitative study using semistructured interviews, by telephone or video call. People who have been advised to ‘cocoon’/‘shield’ and/or are aged 70 years or over and using at least one long-term medication, or their caregivers, will be eligible for inclusion. We will recruit 100 patient/carer participants: 50 from the UK and 50 from Ireland. Recruitment will be supported by our patient and public involvement (PPI) partners, personal networks and social media. Individual participant consent will be sought, and interviews audio/video recorded and/or detailed notes made. A constructivist interpretivist approach to data analysis will involve use of the constant comparative method to organise the data, along with inductive analysis. From this, we will iteratively develop best practice guidance about household medication safety practices during a pandemic from the patient’s/carer’s perspective.Ethics and disseminationThis study has Trinity College Dublin, University of Limerick and University College London ethics approvals. We plan to disseminate our findings via presentations at relevant patient/public, professional, academic and scientific meetings, and for publication in peer-reviewed journals. We will create a list of helpful strategies that participants have reported and share this with participants, PPI partners and on social media.

PP124 Smart Capability Building For Effective Patient Involvement

2019 ◽  
Vol 35 (S1) ◽  
pp. 59-60
Author(s):  
Claire Davis ◽  
Sophie Hughes ◽  
Susan Myles
Keyword(s):  
Best Practice ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
The Public ◽  
Health Technologies ◽  
Capability Building ◽  
Working Together ◽  
Strategy Building

IntroductionA new Health Technology Assessment (HTA) agency, Health Technology Wales (HTW), has been established to consider the identification, appraisal, and adoption of non-medicine health technologies. This includes, for example, medical devices, surgical procedures and diagnostics. HTW recognizes the importance of effective patient and public involvement (PPI) and is building smart capabilities.MethodsHTW consulted with external organizations to identify the first steps toward effective PPI. Public partners were recruited as a priority before working together on a PPI strategy. Building smart capabilities is key to establishing effective PPI and future-proofing. HTW established a PPI Standing Group to inform HTW throughout its work, including the development of processes and procedures.ResultsKnowledge and resources have been shared and future collaborations identified, including events to encourage new topics from patients and the public. The HTW PPI lead has become a member of key PPI groups, locally and internationally. HTW has recruited public partners who are actively contributing as full members of the Assessment Group and the Appraisal Panel; two members on each Committee. The PPI Standing Group has been established. They have provided advice and co-produced PPI tools for piloting.ConclusionsThe PPI Standing Group concluded that PPI methods and approaches should be tailored for each project based on best practice, and should be piloted to allow them to evolve based on impact evaluation. A PPI strategy or framework would be more useful at a later stage. HTW is committed to identifying and following best practice. Future-proofing and building smart capability will be key to ensuring that HTW develops effective PPI that can be dynamic and responsive to the evolving PPI and HTA landscapes.

Evidence-based patient/public voice: a patient and public involvement audit in the field of sexual health

2018 ◽  
Vol 44 (4) ◽  
pp. 267-271 ◽  
Author(s):  
Jane Meyrick ◽  
Debra Gray
Keyword(s):  
Sexual Health ◽  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Research Unit ◽  
Sexually Transmitted ◽  
Evaluation Measures ◽  
Wide Variability ◽  
Definition Of ◽  
Health Field

BackgroundThe National Health Institute constitution enshrines the central role of patient and public involvement (PPI) in order to place patients at the heart of the NHS. The sexual health field presents unique challenges for PPI in the tension between current PPI practice versus the need for confidentiality/feelings of shame/stigma. However, there is little evidence around the goals, evaluation measures or theoretical underpinnings of PPI.ObjectivesIn order to improve current PPI practice in the sexual health field, audits were carried out on PPI plans in both service and research sectors.Methods18 local sexual health service contacts completed the audit through snowballing. The tool was refined and five research projects completed the audit from the Health Protection Research Unit in BloodBorne and Sexually Transmitted Infections. Responses were collated and a thematic analysis by two independent researchers carried out. Common areas for improvement were identified.ResultsAudit tool responses evidenced wide variability in practice. Issues included conflation of PPI work and qualitative research; limited ‘patient satisfaction’ approaches; lack of PPI goals; methodological reliance on ‘visible’ methods such as focus groups; lack of responsiveness around patient needs and poor resourcing of PPI work. Research specific issues included ‘late’ PPI after key decisions had been made and poor lay summary validity.DiscussionTwo audits evidenced a range of areas for improvement of PPI practice in sexual health. Clear definition of ‘what PPI is for’ aligned with evaluation measures would begin to build an evidence base for the contribution of patient voice.

Patient involvement in quality management: rationale and current status

2015 ◽  
Vol 29 (5) ◽  
pp. 556-569 ◽  
Author(s):  
Oliver Groene ◽  
Rosa Sunol
Keyword(s):  
Quality Improvement ◽  
Best Practice ◽  
Public Involvement ◽  
Service Providers ◽  
Patient And Public Involvement ◽  
Cross Sectional Study ◽  
Current Status ◽  
Cross Sectional ◽  
Content Type ◽  
Single Strategy

Purpose – The purpose of this paper is to review how patient and public involvement (PPI) can contribute to quality improvement functions and describe the levels of PPI in quality improvement functions at hospital and departmental level in a sample of European hospitals. Design/methodology/approach – Literature review and cross-sectional study. Findings – PPI takes multiple forms in health care and there is not a single strategy or method that can be considered to reflect best practice. The literature reveals that PPI can serve important functions to support quality improvement efforts. In contrast, the assessment of actual PPI in quality improvement shows that PPI is low. Research limitations/implications – Findings are not representative of hospitals in the EU. Practical implications – A diverse set of methods and tools that can be employed to realize PPI. Service providers should consider PPI at all stages, in particular in setting quality standards and criteria and in evaluating the results. Originality/value – Contextualization of empirical findings with case studies from the literature that inform further practice and research on PPI.

scholarly journals Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review

2021 ◽  
pp. bmjqs-2020-012729
Author(s):  
Ruth Cox ◽  
Matthew Molineux ◽  
Melissa Kendall ◽  
Bernadette Tanner ◽  
Elizabeth Miller
Keyword(s):  
Quality Improvement ◽  
Scoping Review ◽  
Best Practice ◽  
Public Involvement ◽  
Qualitative Content Analysis ◽  
Healthcare Quality ◽  
Patient And Public Involvement ◽  
Development Strategies ◽  
Learning And Development ◽  
Healthcare Quality Improvement

BackgroundInternationally, patient and public involvement (PPI) is core policy for health service quality improvement (QI). However, authentic QI partnerships are not commonplace. A lack of patient and staff capability to deliver successful partnerships may be a barrier to meaningful QI collaboration.ObjectivesThe research questions for this scoping review were: What is known regarding the capabilities required for healthcare staff and patients to effectively partner in QI at the service level?; and What is known regarding the best practice learning and development strategies required to build and support those capabilities?MethodsA six-stage scoping review was completed. Five electronic databases were searched for publications from January 2010 to February 2020. The database searches incorporated relevant terms for the following concepts: capabilities for PPI in healthcare QI; and best practice learning and development strategies to support those capabilities. Data were analysed using descriptive statistics and qualitative content analysis.ResultsForty-nine papers were included. Very little peer-reviewed literature focused explicitly on capabilities for QI partnerships and thus implicit paper content was analysed. A Capability framework for successful partnerships in healthcare quality improvement was developed. It includes knowledge, skills and attitudes across three capability domains: Personal Attributes; Relationships and Communication; and Philosophies, Models and Practices, and incorporates 10 capabilities. Sharing power and leadership was discussed in many papers as fundamental and was positioned across all of the domains. Most papers discussed staff and patients’ co-learning (n=28, 57.14%). Workshops or shorter structured training sessions (n=36, 73.47%), and face-to-face learning (n=34, 69.38%) were frequently reported.ConclusionThe framework developed here could guide individualised development or learning plans for patient partners and staff, or could assist organisations to review learning topics and approaches such as training content, mentoring guidelines or community of practice agendas. Future directions include refining and evaluating the framework. Development approaches such as self-reflection, communities of practice, and remote learning need to be expanded and evaluated.

scholarly journals Introducing patient and public involvement practices to healthcare research in Austria: strategies to promote change at multiple levels

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e045618
Author(s):  
Raphaela E Kaisler ◽  
Stefan Tino Kulnik ◽  
Elisabeth Klager ◽  
Maria Kletecka-Pulker ◽  
Eva Schaden ◽  
...  
Keyword(s):  
Public Involvement ◽  
Ethics Committees ◽  
Patient And Public Involvement ◽  
Healthcare Research ◽  
Research Institutes ◽  
Research Communities ◽  
Positive Attitudes ◽  
Open Questions ◽  
Grant Scheme ◽  
The Uk

BackgroundPatient and public involvement (PPI) in research is well-established in the UK. However, it can be challenging to introduce PPI to research communities where there is limited prior knowledge, experience or appreciation of PPI. We aimed to explore current PPI practices, experiences and ethical and operational challenges with PPI within our own research community in Austria, to inform strategies for supporting PPI in Austria going forward.MethodsWe surveyed scientists at 21 research institutes of the Ludwig Boltzmann Gesellschaft (LBG) and representatives of 32 medical and university research ethics committees in Austria using online questionnaires. We analysed quantitative data using descriptive statistics, and we collated textual responses to open questions. We combined survey data with anecdotal evidence from our personal experience to summarise current challenges around implementing PPI in Austria.ResultsNineteen scientists from nine research institutes indicated generally positive attitudes towards PPI. However, the majority reported they rarely or never involved patients and members of the public in roles of consultation, collaboration or control in research. Six of eight ethics committees were unfamiliar with PPI. We discern five current challenges to implementing PPI in Austria: lack of knowledge and skills for PPI among scientists, scepticism about the usefulness of PPI, conflation of PPI with qualitative research, uncertainty about ethical requirements for PPI and uncertainty about publishing PPI activities.DiscussionWe suggest that the provision of guidance about ethical requirements of PPI is a strategic priority. To address this, and following on from a recently introduced PPI training and grant scheme by the LBG, our surveys have initiated a dialogue with ethics committees and have informed the development of a checklist for ethical aspects of PPI.ConclusionOur experiences may provide useful examples to others who seek to introduce or strengthen PPI practices within their own research communities.

Using patient and public involvement to identify priorities for research in long-term conditions management

2020 ◽  
Vol 29 (11) ◽  
pp. 612-617
Author(s):  
Sarah Brand ◽  
Louise Bramley ◽  
Eleanore Dring ◽  
Alison Musgrove
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Healthcare Research ◽  
Long Term Conditions ◽  
Research Themes ◽  
Fundamental Research ◽  
Experience Of Illness

Background: Patient and public involvement (PPI) is increasingly important in healthcare research. Although this is accepted at the level of individual research studies, it has been less well used in scoping fundamental research priorities. It has been suggested that patients with long-term conditions (LTCs) are well placed to influence research priorities in this area due to their accumulated experience of illness over time. Aims: To obtain PPI in research-priority setting for a group with a special interest in LTC research. Discussion: PPI representatives provided views on issues they thought required further research. The facilitators were able to move from the specifics of these ideas to identify cross-cutting research priorities. Conclusion: It was possible to determine broad research themes despite PPI representatives initially articulating identified issues in very specific terms. Facilitating a better understanding of the research process for PPI representatives would allow their contribution to be more effective. Implications for practice PPI should be considered at the beginning of the process when broad research priorities are considered and before the study design. This is particularly so for broad, non-specialty-focused research themes such as LTCs. More work is required to ensure the views of harder-to-reach groups are included in this type of PPI.

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