scholarly journals Representing the ‘Voice’ of Patients: How Third Sector Organisations Conceptualise and Communicate Experiential Knowledge in Health Service Development

2020 ◽  
Author(s):  
Marjaana Jones ◽  
Piia Jallinoja ◽  
Ilkka Pietilä
Keyword(s):  
Health Services ◽  
Public Involvement ◽  
Third Sector ◽  
Patient And Public Involvement ◽  
Knowledge Bases ◽  
Experiential Knowledge ◽  
Service Development ◽  
Individual Interviews ◽  
Third Sector Organisations ◽  
Development Processes

AbstractThe growing prominence of patient and public involvement in health services has led to the increased use of experiential knowledge alongside medical and professional knowledge bases. Third sector organisations, which position themselves as representatives of collective patient groups, have established channels to communicate experiential knowledge to health services. However, organisations may interpret and communicate experiential knowledge in different ways, and due to a lack of inherent authority, it can be dismissed by health professionals. Thus, drawing on individual interviews with organisation representatives, we explore the definitions and uses of as well as the ‘filters’ placed upon experiential knowledge. The analysis suggests that whilst experiential knowledge is seen as all-encompassing, practical and transformative, the organisations need to engage in actions that can tame experiential knowledge and try to balance between ensuring that the critical and authentic elements of experiential knowledge were not lost whilst retaining a position as collaborators in health care development processes.

scholarly journals Demystifying the pathway of assessment and treatment for bipolar disorder – utilising co-production and algorithms to personalise the approach

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S150-S150
Author(s):  
Jessica Nicholls-Mindlin ◽  
Digby Quested ◽  
Matthew Taylor ◽  
Lauren Fuzi ◽  
David Gee
Keyword(s):  
Mental Health ◽  
Bipolar Disorder ◽  
Mental Health Services ◽  
Health Services ◽  
Public Involvement ◽  
Psychological Intervention ◽  
Patient And Public Involvement ◽  
Service Development ◽  
Post Discharge ◽  
Nice Guideline

AimsTo develop an evidence based, patient centred treatment pathway for people experiencing symptoms of bipolar disorder (BD), modifiable to include local resources.MethodThis project was developed in line with current approaches to service development such as coproduction, with patient and public involvement (PPI) and enhancing personalisation of treatment in medicine. As part of a local initiative, a multi-disciplinary team was brought together to understand and analyse the current local pathway for those affected by BD. It was found that the approach to assessment and management was not consistent between locality teams. Two experts by experience who have a diagnosis of BD were invited to become involved with the development of the pathway. Meetings were set up to enable coproduction and elicit information from those with the diagnosis. The responses provided insight into the effectiveness of different approaches used nationally to inform the methods and resources that are most helpful and appropriate to comprehensively support those with the illness.NICE guideline evidence was used to create two algorithms to streamline the care of those with BD in both primary and secondary care. These algorithms include pharmacological, psychological and social approaches. It also considers the junctions at which referrals should be made and the criteria on which decisions are based.ResultOne algorithm was designed for use in primary care and will be distributed to local GPs to clarify the initial steps for assessment and management of BD and the criteria for referral. A second decision tree will be made available to all doctors working in mental health services with detailed medication options, when they are appropriate and whether additional psychological intervention should be considered e.g. post-discharge groups. Other specialist options such as Early Intervention for Psychosis and Perinatal Mental Health Services were also included. An information pack was created to be offered to all those with a diagnosis or possible diagnosis of BD. This contains useful resources such as skills and exercises that patients may find of benefit, external resources and websites regarding additional support and further information on BD, its nature and management.ConclusionThe approach and resources collated here will help to streamline the management of those with bipolar disorder whilst also ensuring a more consistent approach. The involvement of experts by experience and the incorporation of NICE guidelines ensures a well-rounded and comprehensive set of documents that will be helpful to both clinicians and patients.

scholarly journals Demystifying the pathway of assessment and treatment for bipolar disorder – utilising co-production and algorithms to personalise the approach

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S149-S150
Author(s):  
Jessica Nicholls-Mindlin ◽  
Angus McLellan ◽  
David Gee ◽  
Lauren Fuzi ◽  
Matthew Taylor ◽  
...  
Keyword(s):  
Mental Health ◽  
Bipolar Disorder ◽  
Mental Health Services ◽  
Health Services ◽  
Public Involvement ◽  
Psychological Intervention ◽  
Patient And Public Involvement ◽  
Service Development ◽  
Post Discharge ◽  
Nice Guideline

AimsTo develop an evidence based, patient centred treatment pathway for people experiencing symptoms of bipolar disorder (BD), modifiable to include local resources.MethodThis project was developed in line with current approaches to service development such as coproduction, with patient and public involvement (PPI) and enhancing personalisation of treatment in medicine. As part of a local initiative, a multi-disciplinary team was brought together to understand and analyse the current local pathway for those affected by BD. It was found that the approach to assessment and management was not consistent between locality teams. Two experts by experience who have a diagnosis of BD were invited to become involved with the development of the pathway. Meetings were set up to enable coproduction and elicit information from those with the diagnosis. The responses provided insight into the effectiveness of different approaches used nationally to inform the methods and resources that are most helpful and appropriate to comprehensively support those with the illness.NICE guideline evidence was used to create two algorithms to streamline the care of those with BD in both primary and secondary care. These algorithms include pharmacological, psychological and social approaches. It also considers the junctions at which referrals should be made and the criteria on which decisions are based.ResultOne algorithm was designed for use in primary care and will be distributed to local GPs to clarify the initial steps for assessment and management of BD and the criteria for referral. A second decision tree will be made available to all doctors working in mental health services with detailed medication options, when they are appropriate and whether additional psychological intervention should be considered e.g. post-discharge groups. Other specialist options such as Early Intervention for Psychosis and Perinatal Mental Health Services were also included. An information pack was created to be offered to all those with a diagnosis or possible diagnosis of BD. This contains useful resources such as skills and exercises that patients may find of benefit, external resources and websites regarding additional support and further information on BD, its nature and management.ConclusionThe approach and resources collated here will help to streamline the management of those with bipolar disorder whilst also ensuring a more consistent approach. The involvement of experts by experience and the incorporation of NICE guidelines ensures a well-rounded and comprehensive set of documents that will be helpful to both clinicians and patients.

Patient and public involvement in healthcare

2018 ◽  
pp. 613-624
Author(s):  
Maria Flynn ◽  
Dave Mercer
Keyword(s):  
Health Policy ◽  
Health Services ◽  
Power Relations ◽  
Public Involvement ◽  
Nursing Practice ◽  
Patient And Public Involvement ◽  
Practice Research ◽  
Democratic Participation ◽  
Governance Systems ◽  
Research And Education

The impulse for patient and public involvement (PPI) in health services reflects wider societal and policy concerns with citizenship and democratic participation. A consumerist turn in health policy has opened the door to advances in involvement initiatives, with nurses often playing a lead role. These involvement practices have developed in the interlinked areas of nursing practice, research, and education. Effective involvement is predicated upon emancipatory values and, as such, involvement practices are concerned with prevailing power relations. The actual form that involvement takes can be thorough, systematic, and empowering or partial, tokenistic, and subsumed under oppressive governance systems. Ultimately, involvement poses key questions for professional nursing identity, allowing for a re-imagining of professionalism that is essentially democratized and cooperative.

scholarly journals Who should I involve in my research and why? Patients, carers or the public?

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kristina Staley ◽  
Jim Elliott ◽  
Derek Stewart ◽  
Roger Wilson
Keyword(s):  
Lived Experience ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Experiential Knowledge ◽  
Research Quality ◽  
The Public ◽  
Raising Awareness ◽  
Opportunities For Learning ◽  
Dissemination Of Research

AbstractPatient and public involvement in research helps to make it more relevant and useful to the end-users. Involvement influences the design, delivery and dissemination of research, ultimately leading to better services, treatments and care. Researchers are therefore keen to involve patients, carers and public in their work, but are sometimes uncertain about who to involve. Some confusion may arise from the terms used. The UK’s catch-all term ‘patient and public involvement’ suggests this is a single activity, that perhaps both ‘patient’ and ‘public’ input are needed, or that either will do. The terms ‘patient’, ‘carer’ and ‘public’ have been defined, but are not used consistently. In fact there are many different contexts for involvement and many different kinds of decisions made, which then determine whose input will be most valuable.Clarity about the ‘why’ can help answer the ‘who’ question. However, not all researchers are clear about the purpose of involvement. While it is often understood to have a moral purpose, or to improve research quality, this doesn’t always identify who needs to be involved. When learning is understood to be the purpose of involvement, then the most appropriate people to involve are those with relevant experiential knowledge. In research projects, these are people with lived experience of the topic being investigated. This could be patients, carers, members of the public or health professionals.In this article we discuss how involving people who do not have the relevant experiential ‘lived’ knowledge may contribute to ineffective or tokenistic involvement. These people are as likely as researchers to make assumptions, risking missing key insights or resulting in outcomes that are off-putting or even harmful to research participants.We conclude that greater attention needs to be given to the question of who to involve. Raising awareness of the significance of experiential knowledge and the contextual factors that determine whose input will be most useful will help everyone to understand their roles and improve the quality of involvement. It will help to maximise the opportunities for learning, increasing the likelihood of impact, and helping to achieve the ultimate goal of improved health and services.

PATIENT PERSPECTIVE IN HEALTH TECHNOLOGY ASSESSMENT OF PHARMACEUTICALS IN FINLAND

2014 ◽  
Vol 30 (3) ◽  
pp. 306-311 ◽  
Author(s):  
Jenni Kleme ◽  
Marika Pohjanoksa-Mäntylä ◽  
Marja Airaksinen ◽  
Hannes Enlund ◽  
Helena Kastarinen ◽  
...  
Keyword(s):  
Patient Perspective ◽  
Public Involvement ◽  
Qualitative Interviews ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Public Consultation ◽  
Group Discussions ◽  
Individual Interviews ◽  
National Recommendation ◽  
Long Acting

Objectives: The need to consider the patient perspective in health technology assessments (HTA) has been widely recognized. In July 2012, the Finnish Medicines Agency (Fimea) published a national recommendation for integrating the patient perspective into the HTAs of pharmaceuticals. The aim of this study is to describe the development of the recommendation for integrating the patient perspective into the HTA process of pharmaceuticals in Finland.Methods: The development of the recommendation was based on a review of international recommendations and experiences of patient and public involvement in HTA. The draft recommendation was tested in two focus group discussions (n = 7 patients) and three individual interviews among diabetes patients (type 1 or 2) using long-acting insulin treatment. The recommendation was open for public consultation in April 2012 and revised according to the comments received.Results: Patients will be involved in multiple stages of Fimea's HTA process. The recommendation includes step-by-step instructions on how to assess the patient perspective. The main focus is on qualitative interviews, which will be conducted at the beginning of the assessments to gain information, particularly on patient preferences and values, including positive and negative outcomes important to patients and ethical and social aspects of the medicine's use.Conclusions: The recommendation will act as a tool to integrate patients’ experiences, needs and preferences into Fimea's HTAs of pharmaceuticals.

Sign in / Sign up

Export Citation Format

Share Document