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.

scholarly journals Patient and public involvement prior to trial initiation: lessons learnt for rapid partnership in the COVID-19 era

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Zahra Jamal ◽  
◽  
Alexander Perkins ◽  
Christopher Allen ◽  
Richard Evans ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Research Ethics ◽  
Public Involvement ◽  
Ethics Committees ◽  
Patient And Public Involvement ◽  
Research Ethics Committees ◽  
The Public ◽  
Clinical Trials Unit ◽  
The Uk

Plain English summary Patient and Public Involvement (PPI) describes the active involvement of patients and the public in the research process. Through PPI, patients and members of the public are increasingly involved in the design and conduct of clinical trials. PPI has been shown to improve the quality and relevance of research. During the COVID-19 pandemic, clinical trials have been playing a vital role in helping us find ways to prevent and treat the infection and improve our understanding of the virus. It is important that patients and the public are actively involved in deciding how COVID-19 research is carried out. Unfortunately, Research Ethics Committees in the UK have seen far less PPI for COVID-19 research studies compared with research before the pandemic. A key reason for this is that research is being designed much faster than normal and researchers may feel they do not have time to properly involve patients and the public. In this paper, we share our experiences of PPI for a COVID-19 clinical trial. We show that it is possible to rapidly involve patients and the public in COVID-19 clinical trials. We also explain how the design of the clinical trial was changed in response to feedback from public contributors. Lastly, we discuss the wider learning from this process which might be useful for researchers planning PPI activities for COVID-19 clinical trials in the future. Abstract Background: Clinical trials are playing a critical role in the global public health response to the COVID-19 pandemic. Despite the increasing recognition of the value of PPI in clinical trials, just 22% of the COVID-19 research proposals reviewed by Research Ethics Committees in the UK at the start of the pandemic reported PPI. There is a perception that PPI might result in delays in delivering research and therefore delays in obtaining important results. In this paper, we report our experience of rapid PPI for a COVID-19 clinical trial. Methods: RAPID-19 is a COVID-19 clinical trial which was planned to be submitted for fast-track ethics review in the United Kingdom. During the development of the trial protocol, the PPI Panel at the London School of Hygiene & Tropical Medicine Clinical Trials Unit was involved in the design of the study. The meeting with the PPI Panel lasted just over 1 h and was conducted by teleconference. Results: Although we only had a short period of time to explore the study with the PPI Panel, we were able to gain valuable insight into how the trial would be perceived by potential trial participants. Substantive changes were made to the trial to improve the acceptability of the research without compromising the study timelines. Having access to public contributors with relevant lived experience is an important resource for a Clinical Trials Unit and is critical for rapid PPI. The move to remote working due to lockdown required virtual discussions which helped to overcome some of the barriers to organising face-to-face meetings at short notice. Conclusions: PPI for clinical trials can be conducted in a time-efficient manner within the pressured environment of a pandemic. Involving PPI contributors at an early stage in protocol development maximised the opportunity to shape and influence the trial as well as limited potential delays which could occur if changes to the protocol had to be made at a later stage.

Involving older people in the design and conduct of clinical trials

2015 ◽  
Author(s):  
Kate Wilde ◽  
Zena Jones
Keyword(s):  
Personal Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Power Struggle ◽  
Research Strategies ◽  
Academic Knowledge ◽  
Key Points ◽  
The Uk ◽  
New Treatments ◽  
The Impact

Key points• There are strong policy drivers in the UK to involve patients not only as participants in research, but also as members of the research team.• Patient and public involvement (PPI) can have significant benefits to the patient as well as to the research project.• Many research funders require PPI explicitly described and evaluated in research proposals.• Researchers need increased awareness of PPI, guidance, and a framework of how best to implement PPI within their research strategies.• There is a risk of ‘tokenistic’ involvement of service users.• There is the potential for a power struggle between the PPI representative with personal experience and the lead researcher with academic knowledge of the condition studied.• There is a need to formally evaluate the impact of PPI on the effectiveness of research to bring new treatments to patients.

scholarly journals Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

PP22  An exploration of the facilitators and barriers to paramedics’ assessment and treatment of pain in paediatric patients following trauma (EX-PAT)

2020 ◽  
Vol 37 (10) ◽  
pp. e10.3-e11
Author(s):  
Barry Handyside ◽  
Helen Pocock ◽  
Charles Deakin
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Prehospital Emergency Care ◽  
Structured Interviews ◽  
Cross Sectional ◽  
South Central ◽  
Paediatric Patients ◽  
Facilitators And Barriers ◽  
The Uk

BackgroundA cross-sectional service evaluation within South Central Ambulance Service (SCAS) revealed deficiencies in the assessment and management of paediatric patients’ pain resulting from trauma. This suggested a need for further work to identify facilitators and barriers to pain assessment and management amongst this patient group. Studies looking into the barriers and facilitators to paramedics’ assessment and management of paediatrics in pain have been conducted internationally and not solely in traumatic events. These studies are not transferable to the UK setting due to prehospital emergency care differences within these countries.MethodsThis study will utilise qualitative research methods.The study population will be qualified paramedics. In-depth semi structured interviews will be conducted using a guide developed from previous studies and refined at patient and public involvement events. The expected numbers of participants will be 12–15 but will continue to the point of data saturation. Thematic analysis of data will be performed using an open coding technique guided by Braun and Clarke’s six step framework. Once complete member checking will take place with each participant.ResultsIt is anticipated that both positive and negative aspects of paramedics’ role during these incidents will be identified. Previous literature has identified support from colleagues, interaction with parents, and the ability to alleviate pain as facilitators. Barriers have included current educational practices, lack of exposure, guidelines, the prehospital environment, difficulty in assessing young children and difficulty in providing pain relief. It is therefore likely that these themes may emerge but identification of UK-specific barriers and facilitators is anticipated.ConclusionsWith no previous study of this nature conducted before in the UK this could valuably inform the education and teaching provision of ambulance services and universities as well as a platform for policy makers and guideline producers to enhance the tools available to paramedics.

scholarly journals “PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Rebecca Foster ◽  
Hannah Carver ◽  
Jason Wallace ◽  
Alex Dunedin ◽  
Stan Burridge ◽  
...  
Keyword(s):  
Substance Use ◽  
Public Involvement ◽  
Life Experiences ◽  
Patient And Public Involvement ◽  
Main Body ◽  
The Public ◽  
Harm Reduction Intervention ◽  
The Rich ◽  
The Uk ◽  
Do So

Abstract Background Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research. Main body In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration. Short conclusion It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.

scholarly journals Optimising an intervention to support home-living older adults at risk of malnutrition: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Liz Payne ◽  
Daniela Ghio ◽  
Elisabeth Grey ◽  
Joanna Slodkowska-Barabasz ◽  
Philine Harris ◽  
...  
Keyword(s):  
Older Adults ◽  
At Risk ◽  
Public Involvement ◽  
Target Population ◽  
High Energy ◽  
Patient And Public Involvement ◽  
Community Dwelling ◽  
Good Nutrition ◽  
Intervention Content ◽  
The Uk

Abstract Background In the UK, about 14% of community-dwelling adults aged 65 and over are estimated to be at risk of malnutrition. Screening older adults in primary care and treating those at risk may help to reduce malnutrition risk, reduce the resulting need for healthcare use and improve quality of life. Interventions are needed to raise older adults’ risk awareness, offer relevant and meaningful strategies to address risk and support general practices to deliver treatment and support. Methods Using the Person-based Approach and input from Patient and Public Involvement representatives, we developed the ‘Eat well, feel well, stay well’ intervention. The intervention was optimised using qualitative data from think aloud and semi-structured process evaluation interviews with 23 and 18 older adults respectively. Positive and negative comments were extracted to inform rapid iterative modifications to support engagement with the intervention. Data were then analysed thematically and final adjustments made, to optimise the meaningfulness of the intervention for the target population. Results Participants’ comments were generally positive. This paper focuses predominantly on participants’ negative reactions, to illustrate the changes needed to ensure that intervention materials were optimally relevant and meaningful to older adults. Key factors that undermined engagement included: resistance to the recommended nutritional intake among those with reduced appetite or eating difficulties, particularly frequent eating and high energy options; reluctance to gain weight; and a perception that advice did not align with participants’ specific personal preferences and eating difficulties. We addressed these issues by adjusting the communication of eating goals to be more closely aligned with older adults’ beliefs about good nutrition, and acceptable and feasible eating patterns. We also adjusted the suggested tips and strategies to fit better with older adults’ everyday activities, values and beliefs. Conclusions Using iterative qualitative methods facilitated the identification of key behavioural and contextual elements that supported engagement, and issues that undermined older adults’ engagement with intervention content. This informed crucial revisions to the intervention content that enabled us to maximise the meaningfulness, relevance and feasibility of the key messages and suggested strategies to address malnutrition risk, and therefore optimise engagement with the intervention and the behavioural advice it provided.

Making it clear and relevant: patients and carers add value to studies through research document reviews

2016 ◽  
Vol 20 (1) ◽  
pp. 36-43 ◽  
Author(s):  
Kristina Staley ◽  
Joanne Ashcroft ◽  
Lisa Doughty ◽  
George Szmukler
Keyword(s):  
Public Involvement ◽  
Ethics Committees ◽  
Patient And Public Involvement ◽  
Ethical Review ◽  
Evaluation Team ◽  
Content Type ◽  
Regulatory Processes ◽  
Health And Social Care ◽  
Set Up ◽  
Research Document

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process. Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice. Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers. Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research. Originality/value – This original work adds value to the practice of patient and public involvement in research.

scholarly journals Virtual Worlds as a Tool to Facilitate Weight Management for Young People

2013 ◽  
Vol 6 (1) ◽  
Author(s):  
Michael James Taylor ◽  
Dave Taylor ◽  
Myutan Kulendran ◽  
Paul Gately ◽  
Ara Darzi
Keyword(s):  
Young People ◽  
Weight Management ◽  
Virtual Worlds ◽  
Second Life ◽  
Public Involvement ◽  
Well Being ◽  
Patient And Public Involvement ◽  
3 Dimensional ◽  
Sustained Weight Loss ◽  
The Uk

Childhood obesity is a serious problem in the UK, with around 20% of children aged 10-11 being overweight or obese. Lifestyle interventions can be effective, but there is limited evidence of their effectiveness in delivering sustained weight loss. The present research explored potential of web-based, 3-dimensional virtual worlds (VWs) for facilitation of weight-management, well-being and patient and public involvement (PPI) for young people. Attendees of a weight management camp took part in induction sessions for use of the VW of Second Life. All participants successfully learned how to interact with one another and navigate the virtual environment. Participant appraisals of Second Life were varied. Some found it complicated and difficult to use, and some found it fun and the majority stated that they would choose to use VWs again. There is considerable potential for use of VWs to promote weight management, and Second Life or a similar VW could be used to deliver this. Potential barriers include members of the target sample having limited access to computers with necessary system requirements for running VWs, and that some may find VW-based educational experiences unappealing or challenging to navigate. For some however, VWs may provide a useful mode for provision of education, PPI and support relating to weight management.

scholarly journals Using the Plan-Do-Study-Act model: Pacesetters experiences

2013 ◽  
Vol 26 (7) ◽  
pp. 593-600 ◽  
Author(s):  
Pam Moule ◽  
David Evans ◽  
Katherine Pollard
Keyword(s):  
Case Studies ◽  
Public Involvement ◽  
Action Learning ◽  
Patient And Public Involvement ◽  
Work Place ◽  
Enabling Factors ◽  
Content Type ◽  
Evaluation Approach ◽  
External Evaluators ◽  
The Uk

Purpose – This article aims to analytically review the Plan-Do-Study-Act (PDSA) model used in the Pacesetters national programme evaluation. Design/methodology/approach – The evaluation team's two-fold role is outlined: supporting project teams to develop PDSA plans and collect evaluation data. Four case studies are used to show the PDSA model's application and effect in a participatory action learning approach. Despite limitations, it is clear that all four case studies illustrate the PDSA model's potential benefits in a participatory evaluation approach, which involves public and patients. Findings – The model's effectiveness is premised on several enabling factors such as: teams appreciating the model; a climate that values all learning and open to re-planning; engaging any external evaluators whose role is clearly communicated to all project stakeholders in a timely fashion. Practical implications – There are clear intentions to promote evidence-based commissioning in the UK that values patient and public involvement. The PDSA model has the potential to test and implement changes in real work-place settings and to involve the public in evaluation. Originality/value – Case study analysis identifies new reflections on the PDSA model's use to support innovative NHS practice development with public involvement in a participatory approach.

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