Ethics and research in psychiatry: Engagement with patients and public

2020 ◽  
pp. 71-82
Author(s):  
Stephani L. Hatch ◽  
Billy Gazard ◽  
Diana Rose
Keyword(s):  
Public Engagement ◽  
Public Involvement ◽  
Ethical Issues ◽  
Patient And Public Involvement ◽  
Psychiatric Research ◽  
Significant Shift ◽  
Service Users ◽  
Participatory Action ◽  
The Public ◽  
Patient And Public Engagement

This chapter explores the ethical issues that arise in psychiatric research in relation to engagement with patients and the general public. Over the past decade, there has been a significant shift in psychiatric and other medical research that places an emphasis on the engagement and involvement of patients and the public. This shift has resulted in changes in the expectations of the way research is conducted and disseminated, specifically regarding the level of scientific knowledge that should be accessible to service users and the public. The chapter begins by making the distinction between patient and public engagement and patient and public involvement. It then discusses basic ethical principles as they relate to engagement, and provides examples of how patient and public engagement is situated within psychiatric research agendas, particularly as it relates to participatory action approaches. It concludes with three brief case studies of engagement approaches in psychiatric research with discussion of ethical issues that may arise in different types of engagement.

OP82 Ethical Challenges Related To Engaging Patients And The Public In HTA

2018 ◽  
Vol 34 (S1) ◽  
pp. 30-30
Author(s):  
Meredith Vanstone ◽  
Julia Bidonde ◽  
Ken Bond ◽  
Julia Abelson ◽  
Lisa Schwartz ◽  
...  
Keyword(s):  
Public Engagement ◽  
Information Disclosure ◽  
Ethical Issues ◽  
Policy Decision ◽  
Health Technology ◽  
Ethical Challenges ◽  
Recruitment Methods ◽  
The Public ◽  
Risks And Benefits ◽  
Patient And Public Engagement

Introduction:It is widely recognized that the incorporation of patient and public perspectives can enrich health policy decision-making. Methodological and practical advice on engaging patients and the public has proliferated in recent years, with many health technology assessment (HTA) agencies working to formalize their processes in this area. However, despite growing enthusiasm for patient and public engagement, many ethical issues remain unaddressed including: balancing risks and benefits to participants; recruitment methods; reimbursement for time spent participating; representation; and, information disclosure.Methods:In this critical analysis, we draw on our collective experiences engaging with patients and public in the context of HTA. We use principles from two theories, i) research ethics, and ii) participatory governance, to analyze these challenges. The purpose of this analysis is to explore the ways in which risks and benefits to patient and public participants might be balanced in HTA activities.Results:We begin by describing some ethically challenging experiences we have faced when soliciting views and values from patients and members of the public, some anticipated and some unexpected. These challenges include unexpected disclosures of information, navigating power differentials when working with vulnerable populations, eliciting information about potentially traumatizing experiences, and fairly representing controversial and conflicting opinions. We offer examples about what types of patient engagement activities may subject participants to unreasonable risk, and suggest some guiding principles to help plan ethical patient and public engagement activities.Conclusions:Patient and public engagement requires more than just procedural methodological expertise- it also requires the ability to identify and analyze relevant ethical issues. We posit that health technology assessors have a moral obligation to ensure that the risks of patient and public engagement activities do not outweigh the benefits. We call upon the HTA community to engage in thoughtful deliberation about what can be learned from experiences within HTA and in other contexts.

PP115 Patient And Public Involvement In Health Technology Assessment: Update Of A Systematic Review

2017 ◽  
Vol 33 (S1) ◽  
pp. 126-126 ◽  
Author(s):  
Mylène Tantchou ◽  
Marie-Pierre Gagnon ◽  
Thomas Poder
Keyword(s):  
Systematic Review ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Public Involvement ◽  
Field Studies ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Previous Systematic Review ◽  
The Public ◽  
Patient And Public Engagement

INTRODUCTION:There is a general consensus on the need to involve patients and the public in Health Technology Assessment (HTA) but questions remain about the best strategies for involving them into HTA structures and activities. The aim of this study was to update a systematic review (published in 2011) on patient and public engagement in HTA.METHODS:We searched papers published between January 2009 (end of the initial search) and November 2016 in eight databases and HTA journals using specific search strategies. We identified other publications through citation tracking, Internet search engines, HTA agencies websites, and discussion with experts in the field. Studies in English or French were included if they met the following criteria: (i) qualitative, quantitative or mixed-methods study; (ii) describing patients or public involvement; and (iii) in the HTA field. We extracted information using a pre-established grid including: characteristics of studies, type of activities for involving patients or public, effects on decisions, and factors facilitating or limiting involvement.RESULTS:We identified a total of 4,762 new publications from the main search strategy. Among them, twenty-eight articles (reporting on twenty-three studies) met the inclusion criteria, whereas seventeen articles were included in the previous systematic review. Research designs are qualitative (18/23), quantitative (3/23) or mixed (2/23). Two main strategies for involving patients and public are generally described. The first is when public representatives participate directly in decision-making processes (participation) and the second is when patient or public input is sought to inform decisions (consultation or indirect participation).CONCLUSIONS:The number of studies on patient and public involvement in HTA has increased in recent years. Findings from this update are mainly consistent with those of the previous systematic review. However, studies are still needed to assess the effectiveness of different strategies for involving patients and the public in HTA.

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.

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.

scholarly journals Open Science and the Science-Society Relationship

Society ◽  
2019 ◽  
Vol 56 (3) ◽  
pp. 246-255 ◽  
Author(s):  
Martin Lakomý ◽  
Renata Hlavová ◽  
Hana Machackova
Keyword(s):  
Public Engagement ◽  
Science Communication ◽  
Ethical Issues ◽  
Current Knowledge ◽  
Open Science ◽  
Unintended Consequences ◽  
Future Research ◽  
The Public ◽  
Science Society ◽  
Scientific Institutions

Abstract Nowadays, the prevailing trend in the science-society relationship is to engage with the broader public, which is beneficial for the public, scientific institutes, scientific findings, and the legitimacy of science as a whole. This article provides a broad review of the rapidly growing research on Open Science and identifies the gaps in the current knowledge for future research. The review focuses on the science-society relationship, such that knowledge from this field is summarised and systematised. Insight into the most salient topics, including science communication, public engagement with science, public cognition of science, and challenges and potential unintended consequences connected to interactions with the public are examined. The first section of the paper focuses on science communication which involves efforts and approaches to inform the public about science by the most effective means. The section on public engagement reviews how scientists and scientific institutions are increasingly involved in direct interactions with the public and different groups of stakeholders to make science more open. The section focusing on public cognition of science provides information about public knowledge, perception, and trust regarding science, which both determines and is formed by public engagement. Last, risks, ethical issues, and data issues connected to the implementation of Open Science principles are reviewed, as there are many unintended consequences of Open Science which are examined by this current research. In conclusion, research covering the science-society relationship is rapidly growing. However, it brings multiple challenges as well as opportunities which are captured and discussed in a variety of existing studies. This article provides a coherent overview of this field in order to bring more comprehensible knowledge to scientists, scientific institutions, and outreach professionals.

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.

scholarly journals Designing a Clinical Pharmacy Primary Care Intervention for Myocardial Infarction Patients Using a Patient and Public Involvement Discussion

Pharmacy ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. 13
Author(s):  
Zahraa Jalal ◽  
Vibhu Paudyal ◽  
Shahad Al-Arkee ◽  
Gillian Dyson ◽  
John Marriott
Keyword(s):  
Myocardial Infarction ◽  
Primary Care ◽  
Focus Group ◽  
Clinical Pharmacy ◽  
Clinical Pharmacist ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Pharmacy Services ◽  
The Public ◽  
Pharmacy Intervention

Objective: to conduct a Patient and Public Involvement (PPI) focus group session. To help inform the design of a clinical pharmacy intervention in primary care for patients after a coronary event. Methods: this study followed a public involvement method. Community members of the public and community engaged research patients who had experienced myocardial infarction where invited to actively take part in a focus group discussion. This is to share past experiences and provide input and advice into the design of a potential research proposal. The session took place at a cardiac rehabilitation centre. Results: four key themes were identified from the focus group these included: experiences with pharmacy and primary care services, medicines knowledge, the pharmacist role and building rapport with healthcare professionals. Nine participants and three researchers attended the PPI discussion session. Seven of the participants were patients who had experienced a cardiac event in the last three months and two were carers. Primary care pharmacy services both clinical and public health were not very familiar to the participants. Different experiences with clinical pharmacy services were reported by participants, while one experience was reported to be helpful others perceived community pharmacists to be to be busy and isolated behind a counter. A general practice GP based specialist nurse was a familiar model of care unlike a specialist clinical pharmacist GP based care role. Participants reported limited time in GP consultations and the need to book double appointments. Participants stressed the need to receive consistent information about their disease and medication from different professionals involved in their care. Different views were expressed regarding the ability to build rapport with a clinical pharmacist when compared to a GP. Input on study outcomes and design was provided by participants. Conclusion: participants in this session mentioned that a clinical pharmacy intervention after hospital discharge would be useful for their continuity of care. Plans are in place to continue to involve patients and the public in the write up, ethics and dissemination of the potential clinical pharmacy proposal.

From ‘Opening Up’ to Democratic Renewal: Deepening Public Engagement in Legislative Committees

2017 ◽  
Vol 54 (1) ◽  
pp. 25-51 ◽  
Author(s):  
Carolyn M. Hendriks ◽  
Adrian Kay
Keyword(s):  
Social Media ◽  
Deliberative Democracy ◽  
Public Engagement ◽  
Public Involvement ◽  
The Public ◽  
Central Task ◽  
Committee Work ◽  
The World ◽  
Legislative Committees ◽  
Opening Up

Many legislatures around the world are undergoing a ‘participatory makeover’. Parliaments are hosting open days and communicating the latest parliamentary updates via websites and social media. Public activities such as these may make parliaments more informative and accessible, but much more could be done to foster meaningful democratic renewal. In particular, participatory efforts ought to be engaging citizens in a central task of legislatures – to deliberate and make decisions on collective issues. In this article, the potential of parliamentary committees to bring the public closer to legislative deliberations is considered. Drawing on insights from the practice and theory of deliberative democracy, the article discusses why and how deeper and more inclusive forms of public engagement can strengthen the epistemic, representative and deliberative capacities of parliamentary committees. Practical examples are considered to illustrate the possibilities and challenges of broadening public involvement in committee work.

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