scholarly journals The role of patient and public involvement in oral health and HIV/AIDS research, practice and policy

Oral Diseases ◽  
2020 ◽  
Vol 26 (S1) ◽  
pp. 117-122 ◽  
Author(s):  
Vaishali Sharma Mahendra ◽  
Amitha Ranauta ◽  
Anandi Yuvraj ◽  
Anthony J. Santella ◽  
Aditia Taslim ◽  
...  
Keyword(s):  
Oral Health ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Practice ◽  
Aids Research ◽  
Hiv Aids

‘Patient Zero’

2013 ◽  
Vol 17 (1) ◽  
pp. 5-21
Author(s):  
Stephen J. Macdonald ◽  
David Taylor-Gooby
Keyword(s):  
General Practitioners ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
North East ◽  
The North ◽  
Advisory Groups ◽  
Healthcare It ◽  
Health Practitioners ◽  
Major Shift

Over the last three years, there has been a major shift in healthcare policy within England. This has radically altered the relationship between General Practitioners (GPs) and patients. This article examines the role of patient and public involvement within the National Health Service (NHS) from the perspective of volunteers and health practitioners. The aim of the study is to explore how different models of patient and public involvement (PPI) are characterised through ideological perspectives which construct the goals and motivations of service users and health practitioners. This article draws on data from a small qualitative study of 16 participants analysing different narratives and experiences of patient and public involvement within the North East of England. The study analyses data from health professionals, including General Practitioners and health managers, and patient volunteers who make up part of a range of different health advisory groups in the NHS. Whilst all respondents agree about the importance of public involvement to assist localised NHS healthcare, it should be noted that what is meant by patient and public involvement in this study is somewhat unclear for people involved in the process. The research concludes by illustrating how practitioners’ and volunteers’ interpretations of patient and public involvement diverge in terms of their expressed motivations, aims, goals and expectations.

scholarly journals Understanding the role of patient and public involvement in renal dietetic research

2017 ◽  
Vol 4 (2) ◽  
pp. 23-32 ◽  
Author(s):  
Andrew Morris ◽  
Deborah Biggerstaff ◽  
Nithya Krishnan ◽  
Deborah Lycett
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement

scholarly journals Individuals’ Decision to Disclose a Diagnosis of Dementia and the Development of an Online Empowerment Intervention

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 589-590
Author(s):  
Mauricio Molinari Ulate ◽  
Jem Bhatt ◽  
Jennifer Lynch ◽  
Katrina Scior ◽  
Georgina Charlesworth ◽  
...  
Keyword(s):  
Public Involvement ◽  
Adverse Reactions ◽  
Psychosocial Health ◽  
Patient And Public Involvement ◽  
Dementia Diagnosis ◽  
Factors Influencing ◽  
People With Dementia ◽  
Complex Process ◽  
Diagnosis Of Dementia

Abstract Learning to live with a diagnosis of dementia is a complex process. Many people affected by dementia choose not to disclose the diagnosis to others and avoid social activities due to fear of others’ adverse reactions. This in turn can limit their social participation and negatively affect their psychosocial health. A systematic review explored factors influencing the decision to disclose or conceal a dementia diagnosis to one’s social network, including individuals’ attitudes and experiences regarding this decision. The sixteen studies included reveal the complexity of this decision. Findings highlight the role of stigma and individuals’ wishes to remain ‘normal’, but also the need of explaining what has changed. Results were further discussed with people with dementia and informal caregivers as part of patient and public involvement. End users expressed their attitudes, needs, and wishes towards the design of an online empowerment intervention supporting disclosure decision-making in people affected by dementia.

The Role of Patient and Public Involvement in Evidence-Based Dermatology

2014 ◽  
pp. 12-16
Author(s):  
Carron Layfield ◽  
Amanda Roberts ◽  
Jason Simons ◽  
Colette O'Sullivan ◽  
Anjna Rani ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Evidence Based

scholarly journals The role of patient and public involvement leads in facilitating feedback: “invisible work”

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Elspeth Mathie ◽  
Nigel Smeeton ◽  
Diane Munday ◽  
Graham Rhodes ◽  
Helena Wythe ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Invisible Work

scholarly journals Role of patients’ organizations in Health Technology Assessment: a Habermasian system and lifeworld perspective

2020 ◽  
pp. 1-4
Author(s):  
Neda Milevska-Kostova ◽  
Sita Ratna Devi Duddi ◽  
Richard J. Cooper
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Involvement ◽  
Public Involvement ◽  
Communicative Action ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Social Theories ◽  
Policy Communities

Abstract Patient and public involvement in Health Technology Assessment (HTA) is gaining increased interest among research and policy communities. Patients’ organizations represent an important link between individual patients and the health system. Social theories are increasingly being used to explain doctor–patient–system interactions, expanding understanding beyond the mere clinical perspective. In this sense, patient involvement in HTA can also be considered through the Habermas’s theory of communicative action. From a Habermasian perspective, HTA as part of the instrumental rationality contributes to an increased efficiency of resource use within the system; however, such rationalization threatens to colonize the lifeworld by making it “increasingly state administered with attenuated possibilities for communicative action as a result of the commercialization and rationalization in terms of immediate returns.” Using Habermasian system/lifeworld framework, this paper explores opportunities and obstacles to patient involvement in HTA, whereby trying to understand current and possible roles of patients’ organizations as a mediating force between HTA as a function of the system and the lifeworld represented by patients.

scholarly journals Formalising the induction of patient and public involvement contributors on trial oversight committees

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Emily C. Pickering ◽  
Bec Hanley ◽  
Philip Bell ◽  
Jacqui Gath ◽  
Patrick Hanlon ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
General Role ◽  
Face To Face ◽  
Full Picture ◽  
Clinical Trials Unit ◽  
Research Organisations ◽  
Trial Oversight

Abstract Background Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of trial design, running and oversight. This research explored the induction and training of PPI Contributors joining trial oversight committees and was used to update the Medical Research Council Clinical Trials Unit at University College London’s (MRC CTU at UCL) induction pack for new PPI Contributors. Methods Published and unpublished materials provided by other CTUs and research organisations on training for PPI Contributors on oversight committees were reviewed, with themes then triangulated to identify the most common topics covered in induction training. A face-to-face workshop with PPI Contributors from the MRC CTU at UCL reviewed a draft updated Induction Pack. Findings from these discussions were incorporated into a revised induction pack which was then re-reviewed by the workshop attendees. Results No published literature on this subject was found. However, several common themes were identified from unpublished materials. Workshop attendees agreed with most of the themes suggested in the initial draft pack based on the literature search and also provided a number of additional topics for discussion. Conclusions There is very little consistency in the induction of PPI Contributors on oversight committees. Whilst most local guidance explains the general role of a PPI Contributor, more context and background of the particular trial needs to be provided to allow for adequate induction of new committee members. The Induction Pack created provides a framework upon which trial managers can build a full picture of their study.

scholarly journals Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

2020 ◽  
Vol 4 (1) ◽  
pp. 47-65
Author(s):  
Rebecca Sheridan ◽  
Jennifer Preston ◽  
Simon R Stones ◽  
Sammy Ainsworth ◽  
Danielle Horton Taylor ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Research Practice ◽  
The Public ◽  
Specific Input ◽  
The People ◽  
Clinical Trial Information

There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

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