scholarly journals Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

2021 ◽  
Vol 3 ◽  
Author(s):  
Mark Rasburn ◽  
Helen Crosbie ◽  
Amanda Tonkinson ◽  
David Chandler ◽  
Tasneem Dhanji ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
Potential Barriers ◽  
The United Kingdom ◽  
Patient Representatives ◽  
Virtual Setting ◽  
Patient Concerns ◽  
Rapid Shift

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

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 Public and patient involvement in research on ageing and dementia

2020 ◽  
Vol 19 (3) ◽  
pp. 259-264
Author(s):  
Julian Ashton ◽  
Clare F. Aldus ◽  
Peter Richmond ◽  
Helen Allen
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Social Implications ◽  
Content Type ◽  
The Public ◽  
Leading Role ◽  
Current State ◽  
Significant Difference ◽  
Public And Patient Involvement

Purpose This paper aims to assess the current state, and various methods, of public and patient involvement, particularly but not exclusively in research on ageing and dementia. Design/methodology/approach Interviews were carried out with a researcher, who has had a leading role in research on dementia; a public contributor with extensive relevant experience; and a member of the research design service with responsibility for patient and public involvement. Findings All those involved in the research can benefit considerably from public and patient involvement and it can make a significant difference to the course of a project. The importance of choosing an appropriate method of involvement is discussed and planning for it in both financial terms and time allowed. Examples are given of successful studies. Research limitations/implications Those who took part in the interviews were chosen for their record in furthering public and patient involvement in research. There is no attempt to compare their views with those of the wider research community. Practical implications The various ways in which patients and the public are involved in relevant research is a guide to those designing projects and those who may want to explore opportunities for involvement. Social implications Social implications include being able to influence research projects, contributors of all ages find they are valued. Originality/value The format of the paper is original, eliciting material from three viewpoints on research and involvement.

What are Important Ways of Sharing Power in Health Research Priority Setting? Perspectives From People With Lived Experience and Members of the Public

2021 ◽  
pp. 155626462110132
Author(s):  
Bridget Pratt
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Priority Setting ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
The United Kingdom ◽  
Research Priority ◽  
Health Research Priority Setting

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

scholarly journals PATIENT AND PUBLIC INVOLVEMENT IN EARLY AWARENESS AND ALERT ACTIVITIES: AN EXAMPLE FROM THE UNITED KINGDOM

2018 ◽  
Vol 34 (1) ◽  
pp. 10-17 ◽  
Author(s):  
Sue Simpson ◽  
Alison Cook ◽  
Kathryn Miles
Keyword(s):  
United Kingdom ◽  
Web Site ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Early Assessment ◽  
The Public ◽  
Health Technologies ◽  
The United Kingdom ◽  
Horizon Scanning ◽  
System Input

Objectives: The aim of this study is to report on the experiences, benefits, and challenges of patient and public involvement and engagement (PPIE) from a publicly funded early awareness and alert (EAA) system in the United Kingdom.Methods: Using email, telephone, a Web site portal, Twitter and focus groups, patients and the public were involved and engaged in the recognized stages of an EAA system: identification, filtration, prioritization, early assessment, and dissemination.Results: Approaches for PPIE were successfully integrated into all aspects of the National Institute for Health Research Horizon Scanning Research and Intelligence Centre's EAA system. Input into identification activities was not as beneficial as involvement in prioritization and early assessment. Patients gave useful insight into the Centre's Web site and engaging patients using Twitter has enabled the Centre to disseminate outputs to a wider audience.Conclusions: EAA systems should consider involving and engaging with patients and the public in identification, prioritization, and assessment of emerging health technologies where practicable. Further research is required to examine the value and impact of PPIE in EAA activities and in the early development of health technologies.

VP01 Methods Of Patient Involvement Now And Beyond 2020: A Case Study

2019 ◽  
Vol 35 (S1) ◽  
pp. 75-75
Author(s):  
Heidi Livingstone ◽  
Gillian Leng ◽  
Victoria Thomas
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Patient Organisation ◽  
The Public ◽  
Included Patient ◽  
Different Types ◽  
Lay Members ◽  
The Common

IntroductionInvolving patients and the public in the health technology assessment (HTA) has always been fundamental to NICE. To ensure the appropriate method of patient involvement remains relevant to the evolving types of HTA, NICE uses varying methods of involvement. These methods have been reviewed to ensure they remain current and relevant for HTA now and beyond 2020, and also to give guidance on the approaches that should form a standard baseline and those that could be optional.MethodsWe identified and mapped the different methods of patient involvement used at NICE across five types of HTAs: diagnostics; medical technologies; medicines; ultra-orphan conditions; and surgical procedures. We looked at the varying methods of early engagement identifying similarities and differences, and considered the benefits and challenges of each.ResultsThe different methods of patient and public involvement include: lay members (generalist and topic expert) involved in decision making, individual patient input (written and oral), and patient group (organisation) input (written). The types of involvement fell into the following categories: written group submissions, written individual statements, surveys of individuals, pre-meeting events/workshops, oral testimonies at committees, and written consultation responses. The common methods across all HTA types were generalist lay members and consultations.ConclusionsThis review highlighted the varying methods of involvement at NICE and highlighted additional methods that could be standardised across the different types of HTAs as a baseline. These included patient organisation submissions and a method for additionally including individual patients in each type of HTA. We identified that where patient involvement started early and continued at each stage of the process including a pre-meeting event, it was particularly helpful to the stakeholders’ ability to contribute.

scholarly journals How to incorporate patient and public perspectives into the design and conduct of research

F1000Research ◽  
2018 ◽  
Vol 7 ◽  
pp. 752 ◽  
Author(s):  
Pat Hoddinott ◽  
Alex Pollock ◽  
Alicia O'Cathain ◽  
Isabel Boyer ◽  
Jane Taylor ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Ethical Considerations ◽  
The Public ◽  
Partnership Research ◽  
Public Perspectives ◽  
Quality Of Research ◽  
Research Funder

International government guidance recommends patient and public involvement (PPI) to improve the relevance and quality of research.  PPI is defined as research being carried out ‘with’ or ‘by’ patients and members of the public rather than ‘to’, ‘about’ or ‘for’ them (http://www.invo.org.uk/). Patient involvement is different from collecting data from patients as participants.  Ethical considerations also differ.  PPI is about patients actively contributing through discussion to decisions about research design, acceptability, relevance, conduct and governance from study conception to dissemination.  Occasionally patients lead or do research.  The research methods of PPI range from informal discussions to partnership research approaches such as action research, co-production and co-learning. This article discusses how researchers can involve patients when they are applying for research funding and considers some opportunities and pitfalls.  It reviews research funder requirements, draws on the literature and our collective experiences as clinicians, patients, academics and members of UK funding panels.

scholarly journals ‘Give Us The Tools!’: development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046450
Author(s):  
Samantha Cruz Rivera ◽  
Richard Stephens ◽  
Rebecca Mercieca-Bebber ◽  
Ameeta Retzer ◽  
Claudia Rutherford ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Patient Reported Outcome ◽  
Flow Diagram ◽  
Additional Patient ◽  
The Public ◽  
Patient Reported ◽  
Trial Protocols ◽  
User Friendly

Objectives(a) To adapt the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-patient-reported outcome (PRO) Extension guidance to a user-friendly format for patient partners and (b) to codesign a web-based tool to support the dissemination and uptake of the SPIRIT-PRO Extension by patient partners.DesignA 1-day patient and public involvement session.ParticipantsSeven patient partners.MethodsA patient partner produced an initial lay summary of the SPIRIT-PRO guideline and a glossary. We held a 1-day PPI session in November 2019 at the University of Birmingham. Five patient partners discussed the draft lay summary, agreed on the final wording, codesigned and agreed the final content for both tools. Two additional patient partners were involved in writing the manuscript. The study compiled with INVOLVE guidelines and was reported according to the Guidance for Reporting Involvement of Patients and the Public 2 checklist.ResultsTwo user-friendly tools were developed to help patients and members of the public be involved in the codesign of clinical trials collecting PROs. The first tool presents a lay version of the SPIRIT-PRO Extension guidance. The second depicts the most relevant points, identified by the patient partners, of the guidance through an interactive flow diagram.ConclusionsThese tools have the potential to support the involvement of patient partners in making informed contributions to the development of PRO aspects of clinical trial protocols, in accordance with the SPIRIT-PRO Extension guidelines. The involvement of patient partners ensured the tools focused on issues most relevant to them.

scholarly journals OP0191-PARE DEVELOPMENT OF A PUBLIC AND PATIENT INVOLVEMENT (PPI) RESEARCH NETWORK FOR PEOPLE WHO HAVE RHEUMATIC CONDITIONS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 115.2-115
Author(s):  
L. Larkin ◽  
A. Moses ◽  
T. Raad ◽  
A. Tierney ◽  
N. Kennedy ◽  
...  
Keyword(s):  
Public Health ◽  
Patient Involvement ◽  
Research Network ◽  
Ppi Network ◽  
Face To Face ◽  
The Public ◽  
World Cafe ◽  
Patient Representatives ◽  
The University ◽  
Public And Patient Involvement

Background:Public and patient involvement (PPI) improves quality and relevance of research (1). PPI is advocated by policy makers and funding bodies and is supported by EULAR (2). Arthritis Research Limerick (ARL) is a partnership between researchers at the University of Limerick and clinicians at University Hospitals Limerick. PPI representatives have been involved in ARL projects, however no formal PPI network had been established prior to 2020. The need for a formal PPI network to collaborate with ARL was identified by both ARL and patient representatives. This need arose from a joint ambition to promote meaningful involvement of the public and patients in ARL projects and to develop a platform through which researchers and PPI representatives could collaboratively set research priorities.Objectives:The aim of this project was to create a formal PPI network to engage with people living with rheumatic and musculoskeletal diseases (RMDs) and their families and to identify collaborative research opportunities between ARL and PPI representatives.Methods:A face-to-face PPI seminar was planned for October 2020. The seminar consisted of speakers from ARL providing an overview of research projects and a World Café research ideas session. Funding was obtained through a competitive, peer-review funding call from the PPI Ignite group at the University of Limerick to support the PPI seminar. The funding application was a joint application between ARL members and a PPI partner (iCAN - Irish Children’s Arthritis Network). The seminar was advertised through national patient organisations (iCAN and Arthritis Ireland), social media and ARL research networks.Results:Due to Covid-19 public health restrictions the PPI seminar was held virtually. The ARL PPI inaugural seminar was attended by N=19 researchers and people living with RMDs. The seminar speakers included ARL researchers and a PPI representative. The World Café event was modified to adapt to the virtual seminar delivery. Research ideas were noted by the seminar organiser and summarised for attendees at the end of the research ideas and priorities session. An ARL PPI mailing list was set-up post seminar as a means of communicating with seminar attendees and will serve as a formal PPI network for ARL. Research updates and opportunities will be communicated via this formal network to people living with RMDs and researchers alike.Conclusion:This was the first PPI seminar organised by ARL in collaboration with a PPI seminar, and has led to the creation of a formal PPI network. Delivery mode of the PPI seminar was changed due to Covid-19 public health restrictions. This change may also have impacted engagement and attendance at the PPI seminar, given that virtual events are not accessible to all of the RMD population. Future PPI seminars will consider a hybrid approach of face-to-face and virtual attendance, to enhance accessibility. A formal PPI communication network has been established. Future work will focus future collaborative opportunities between the PPI panel and the ARL group, including project development, co-led research funding applications and joint research dissemination.References:[1]INVOLVE. (2012). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Retrieved from www.invo.org.uk 7th January 2020.[2]de Wit MPT, Berlo SE, Aanerud GJ, et al (2011). European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases 70:722-726Disclosure of Interests:None declared

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

2021 ◽  
Vol 5 (2) ◽  
Author(s):  
Zoë A. Sheppard ◽  
Sarah Williams ◽  
Richard Lawson ◽  
Kim Appleby
Keyword(s):  
General Hospital ◽  
Public Involvement ◽  
District General Hospital ◽  
Patient And Public Involvement ◽  
Rural District ◽  
Relevant Research ◽  
The Public ◽  
Research Volunteers ◽  
Large Groups

The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

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