scholarly journals Public involvement and engagement in primary and emergency care research

2020 ◽  
Vol 5 (3) ◽  
Author(s):  
Bridie Angela Evans ◽  
John Gallanders ◽  
Lesley Griffiths ◽  
Robert Harris-Mayes ◽  
Mari James ◽  
...  
Keyword(s):  
Patient Group ◽  
Emergency Care ◽  
Best Practice ◽  
Public Involvement ◽  
The Public ◽  
Care Research ◽  
Research Activities ◽  
Research Cycle ◽  
Benefit Patient ◽  
Implementation And Dissemination

BackgroundPolicy throughout the United Kingdom promotes involvement of patients and public members inresearch to benefit patient care and health outcomes. PRIME Centre Wales is a national researchcentre, developing and coordinating research about primary and emergency care which forms 90%of health service encounters. In this paper, we describe our approach to public involvement andengagement in PRIME Centre Wales (hereafter called PRIME), in particular: how this approachhas developed; ways in which public members contribute to PRIME activity; the strengths andlimitations of our approach, challenges and future opportunities. PRIME ensures work is relevantto service users, carers, the public and policy makers by incorporating comprehensive patient andpublic involvement in every phase of our work ApproachPRIME has policies and processes to enable and promote successful public involvement andengagement across research activities. This ensures public perspectives and patient experiences areintegrated throughout research development, implementation and dissemination and in managingand delivering PRIME strategy over a 10 year timescale. A public/patient group called SUPER is akey resource providing wide-ranging perspectives via email and face-to-face discussion. We collectinformation on processes and experiences to assess value and impact, to guide ongoing involvementand engagement. A funded post provides leadership and support to staff and to public/patientcontributors to facilitate collaborations. DiscussionA stable, well-resourced structure has provided the timescales to build strong relationships andembed diverse approaches to public involvement and engagement within PRIME. Researchers andpublic contributors have committed to collaborations, developed knowledge and skills and sustainedrelationships. Effective approaches incorporate values and actions which, when operating together,strengthen processes and outcomes of public involvement and engagement. ConclusionSupportive context, motivation and time are necessary to foster values and practices that enableeffective public involvement and engagement. PRIME has embedded public involvement andengagement across research activities and structures. Central is the public/patient group SUPERoffering experience-based expertise to add value to the research cycle. This innovative model, alignedwith best practice, enhances relevance and quality of primary and emergency care research to benefitpatients and the general population.

scholarly journals THE STUDY OF AGING A SEARCH FOR MEANINGFUL PATIENT AND PUBLIC INVOLVEMENT IN GERONTOLOGICAL QUALITATIVE DATA ANALYSIS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S802-S803
Author(s):  
Barbara Hanratty ◽  
Rachel Stocker ◽  
Katie Brittain
Keyword(s):  
Data Analysis ◽  
Research Team ◽  
Qualitative Data ◽  
Public Involvement ◽  
Long Term Care ◽  
Patient And Public Involvement ◽  
Term Care ◽  
The Public ◽  
Care Research

Abstract Patients and the public are involved in health and social care research more than ever before. Much effort has been put into developing patient and public involvement (PPI), and promoting co-production of research with patients and the public. Yet there is little guidance for researchers on how to involve PPI partners in the research process, or how involvement can be judged as meaningful. This presentation has its origins in the attempts of one research team to question and navigate a way of involving PPI in long term care research. In this presentation, we describe our model of collaborative qualitative data analysis with PPI partners, in a study exploring primary care services for older adults living in long-term care facilities in England. Anonymised interview transcript excerpts were presented in written, audio, and role-play format to our PPI partners. PPI partners derived meaning from interview data, identifying, confirming and critiquing emerging themes. Their input at this critical stage of the study deepened our initial analysis and prompted the research team to new and different interpretations of the data. This talk addresses ways of engaging PPI partners in innovative ways during data analysis, and offers other researchers some questions, challenges and potential principles for effective practice. We conclude that in areas such as long term care, with multiple stakeholders and a dynamic environment, effective PPI may be flexible, messy and difficult to define.

Guidance on development and operation of Young Persons’ Advisory Groups

2020 ◽  
Vol 105 (9) ◽  
pp. 875-880
Author(s):  
Winnie Chan ◽  
Pravheen Thurairajah ◽  
Nancy Butcher ◽  
Cor Oosterwijk ◽  
Kim Wever ◽  
...  
Keyword(s):  
Clinical Research ◽  
Best Practice ◽  
Public Involvement ◽  
Web Based ◽  
The Public ◽  
Research Areas ◽  
Advisory Groups ◽  
Semistructured Interviews ◽  
Needs Assessment Survey ◽  
The Impact

BackgroundEngaging patients and the public as collaborators in research is increasingly recognised as important as such partnerships can help improve research relevance and acceptability. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials. Until fairly recently, there was very little information available to guide the successful development and operation of YPAGs.ObjectiveTo develop an evidence-based tool to guide clinical researchers and triallists in the establishment and operation of a YPAG.MethodsAn online needs assessment survey was conducted using SurveyMonkey with 60 known paediatric drug researchers to identify knowledge gaps around YPAG engagement, development and operation. Semistructured interviews with founders and coordinators of five well-established existing YPAGs and a review of the literature were performed to identify best-practice processes for starting up and operating YPAG.ResultsThe majority of 12 survey respondents (20%) from 12 different centres indicated that while they felt YPAGs could benefit their research, guidance on how to develop and operate a YPAG was needed. Most preferred a web-based guidance tool. Ten core steps in starting up and operating a YPAG were identified and developed into an online YPAG guidance tool, now freely accessible for use by paediatric clinical researchers worldwide. Plans to evaluate the impact are in place.ConclusionsThis novel tool, developed with an internationally based group of public involvement leads working across paediatric clinical research areas, provides harmonised guidance for researchers seeking to develop and operate YPAGs to help improve the quality and impact of paediatric clinical research studies.

scholarly journals Patient and public involvement in emergency care research: Table 1

2016 ◽  
Vol 33 (9) ◽  
pp. 665-670 ◽  
Author(s):  
Enid Hirst ◽  
Andy Irving ◽  
Steve Goodacre
Keyword(s):  
Emergency Care ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Care Research

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.

scholarly journals Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research

2019 ◽  
Vol 4 (1) ◽  
Author(s):  
Mhairi Aitken ◽  
Mary P Tully ◽  
Carol Porteous ◽  
Simon Denegri ◽  
Sarah Cunningham-Burley ◽  
...  
Keyword(s):  
Health Research ◽  
Best Practice ◽  
Public Involvement ◽  
Consensus Statement ◽  
Research Community ◽  
Socially Responsible ◽  
The Public ◽  
Data Intensive ◽  
International Group ◽  
Societal Benefits

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field. Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.

Patient and public involvement: in theory and in practice

2014 ◽  
Vol 128 (4) ◽  
pp. 318-325 ◽  
Author(s):  
A Robinson
Keyword(s):  
Research Design ◽  
Patient Group ◽  
Research Funding ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
North East ◽  
Funding Application

AbstractBackground:You've probably heard of patient and public involvement by now. You may even have ‘involved’ people in your research. But why involve patients, carers and members of the public at all? Is it just another hoop to jump through when preparing a research funding application for submission, or could it actually add something to your research? Could involving patients and members of the public even help you to design and deliver better research, with outcomes focused directly on the needs of your patient group?Objective:This article aims to answer some of these questions. It considers the theory underpinning patient and public involvement. This is followed by practical suggestions and advice to help you develop (or further develop if you already involve people!) patient and public involvement within your own research. There is also a case study to illustrate some of the main points, and extracts written by members of Research Design Service North East Consumer Panels.

OP27 Patient Engagement At Scottish Medicines Consortium Committee Meetings

2018 ◽  
Vol 34 (S1) ◽  
pp. 11-11
Author(s):  
Lindsay Lockhart ◽  
Jennifer Dickson ◽  
Anne Lee ◽  
Peter McGrath ◽  
Yvonne Hughes
Keyword(s):  
Lived Experience ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Advisory Group ◽  
Willingness To Participate ◽  
The Public ◽  
Group Participation ◽  
Patient Groups

Introduction:Since 2014 patient group representatives have been able to observe Scottish Medicines Consortium (SMC) committee meetings as members of the public. However, they have had no opportunity to participate in discussions on their submission on the patient experience of living with the condition under review. In 2017, to strengthen patient engagement, we revised our processes to enable representatives from all submitting patient groups to play a bigger part in the monthly meeting.Methods:The SMC Public Involvement Network (PIN) Advisory Group consulted on potential issues around patient group participation in committee meetings. Recommendations approved for implementation included (i) provision of comprehensive information and support to participating patient group representatives, and (ii) holding an educational session for SMC members on ‘What matters to the patient’. The process change was introduced in June 2017. Patient group representatives are invited to complete an online survey on their experience of taking part in the meeting and working with the public involvement team. Implementation is being monitored and will be evaluated in a commitment to continuous improvement.Results:Since June 2017, 14 patient group representatives have attended SMC meetings for the discussion of their submission. This has enabled them to answer questions from committee members and clarify points relating to their submission, if required. Early feedback has been positive with participants believing that patient engagement has been strengthened and that the patient voice was heard and valued. Patient groups expressed a willingness to participate again. The evaluation of their experience to date will be presented.Conclusions:SMC now involves patient group participation at committee meetings, demonstrating commitment to listening and responding to stakeholders on patient engagement. Early feedback has been positive and suggests that discussions relating to quality of life impact on patients and carers better reflect the lived experience. This ensures we are meeting our commitment to openness and transparency and strengthens patient engagement in our process.

scholarly journals Citizen Humanities as a Fusion of Digital and Public Humanities?

2020 ◽  
Author(s):  
Barbara Heinisch
Keyword(s):  
Public Involvement ◽  
Mutual Influence ◽  
Academic Research ◽  
The Public ◽  
Research And Innovation ◽  
Ancient Egyptian ◽  
Research Activities ◽  
New Public ◽  
Tools And Techniques ◽  
Research Analysis

Digital and public humanities have gained a foothold in academia, but very little is known about citizen humanities, which is referring to the engagement of the general public in scholarly research. Although the term is new, public participation in the humanities, either as the citizens’ contribution of intellectual effort or knowledge to academic research, or as the contribution of resources and tools, looks back on a long tradition. The citizen humanities range from the creation of dictionaries, the transcription and annotation of historical records to the decoding of ancient Egyptian papyri. While the digital humanities provide the citizen humanities with data, tools and techniques, the public humanities offer the means of engaging diverse publics in research activities. After embedding the citizen humanities theoretically in the responsible research and innovation paradigm, this paper will illustrate how digitisation and public involvement laid the foundations for today’s citizen humanities. With a focus on the fusion of digital and public humanities in citizen humanities, this paper will demonstrate the mutual influence on practices (of research). This influence is not only reflected in the approaches to research, analysis, communication, and dissemination but also in the citizen humanities’ novel ways of knowledge co-production.

OP80 Impact Of Patient Group Participation At Scottish Medicines Consortium Committee Meetings

2019 ◽  
Vol 35 (S1) ◽  
pp. 20-20
Author(s):  
Jennifer Dickson ◽  
Lindsay Lockhart ◽  
Louise Taylor ◽  
Jackie McCormack ◽  
Laura Walker
Keyword(s):  
Quality Of Life ◽  
Patient Group ◽  
Patient Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
The Public ◽  
Group Participation ◽  
Emerging Themes ◽  
The Impact

IntroductionThe Scottish Medicines Consortium (SMC) encourages patient group (PG) representatives to participate in the decision-making committee meetings, answering questions from committee members and providing points of clarity throughout discussions if required. In a continuous improvement approach the process and the participant experience is continually evaluated to monitor impact and emerging themes.MethodsThe interactions between committee members and PG representatives are recorded in writing by the public involvement team to monitor the questions or points of clarity raised. These interactions were analyzed using thematic analysis to look for emerging themes. Following the meeting, PG representatives are invited to complete an online survey on their experience of working with SMC.ResultsFrom July 2017 to October 2018, 36 PG representatives have attended committee meetings for the discussion of their submission. Committee members asked 17 PG representatives to contribute. Key themes that have emerged to date include insight into the impact of living with the condition on quality of life and how a new medicine may affect this. Survey feedback has been positive with participants reporting that patient engagement has been strengthened, and that the patient voice is heard, valued and supports committee members in making fully informed decisions. PG representatives expressed a willingness to participate again. Feedback also highlighted that the preparatory support offered to PG representatives by the public involvement team is highly valued.ConclusionsPatient group participation in committee meetings has been received positively by PG representatives. They report that discussions relating to quality of life impact of medicines on patients and carers better reflect the lived experience, enriching committee's deliberations. This demonstrates SMCs commitment to openness and transparency and has strengthened patient engagement in our processes.

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