scholarly journals Bridging the Gap: Development of a Patient Public Involvement Group

2021 ◽  
Vol 23 (Supplement_4) ◽  
pp. iv5-iv6
Author(s):  
Claire Goddard ◽  
Helen Benghiat ◽  
Frederick Berki ◽  
Peter Buckle ◽  
William Garratt ◽  
...  
Keyword(s):  
Brain Tumour ◽  
Data Protection ◽  
Health Professionals ◽  
Brain Tumours ◽  
Public Involvement ◽  
Clinical Care ◽  
Patient And Public Involvement ◽  
Service Development ◽  
Core Group ◽  
Patient Advocates

Abstract Aims Every year, the Queen Elizabeth Hospital Birmingham (QEHB) neuro-oncology team review over 2000 individuals with brain tumour. Patient and public involvement (PPI) has been fragmented to date. Initially we invited two patient advocates and a core group of allied health professionals to meet virtually to discuss development of a local PPI group, its aims, specific goals, and timescales to maintain momentum. In March 2021 we launched “BERTI: Brain tumour Education and Research paTient and public Involvement group, West Midlands”. Our inaugural meeting will be virtual in April 2021 and will be followed by three meetings per year. Method We developed information leaflets to promote the BERTI initiative. A membership form has been developed to record baseline information (non-clinical) e.g. contact details, which tumour type the individual is interested in, which aspect of BERTI they are interested in (Education, Research or Clinical service development). Patient advocates have reviewed all patient and public facing forms. All forms have been checked by Information Governance at QEHB to ensure General Data Protection Regulation compliant. Contact details and non-clinical data will be stored in a password protected database on a NHS computer network. Information to ensure members can unsubscribe from this group is easy to find and will be done immediately. A BERTI email account has been set up with a core group of professionals having access who are all fully trained in data protection and have GDPR certification. We will produce an annual BERTI newsletter. Results BERTI is a group for people affected by brain tumours in any way. We include patients, friends and family, health professionals and researchers who are committed to improving the care of people with a brain tumour. It is run between the QEHB and University of Birmingham (UoB). BERTI provides a forum to meet other people affected by brain tumours and - Share experiences; - Understand the condition better; - Work with clinical staff and researchers to improve clinical care and facilitate research for people living with brain tumours. We will meet three times per year, virtually at the moment but face to face once Covid restrictions ease. We will have a formal talks explaining certain aspects of brain tumour or research initiatives. Throughout, there will be dedicated time set aside for group discussions to promote a genuine two-way dialogue between health-care/research professionals and individuals affected by brain tumour. Conclusion The PPI group will be allowed to evolve rather than start out too prescriptive. It will capitalise on its strengths and skills of its composite members. There are no set models rather principles that will provide the foundations for a group which is supported to fulfil their specific purpose. The views of the PPI group will be presented at the quarterly Neuro-Oncology Multi-disciplinary team business meetings to provide a forum to discuss issues. We aim to foster a PPI friendly environment, deliver real engagement and involvement across the group.

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 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. 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.

scholarly journals One-to-One and Group-Based Teleconferencing for Falls Rehabilitation: Usability, Acceptability, and Feasibility Study (Preprint)

2020 ◽  
Author(s):  
Helen Hawley-Hague ◽  
Carlo Tacconi ◽  
Sabato Mellone ◽  
Ellen Martinez ◽  
Lorenzo Chiari ◽  
...  
Keyword(s):  
Older Adults ◽  
Health Care ◽  
Focus Group ◽  
Focus Groups ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Feasibility Testing ◽  
One To One

BACKGROUND Falls have implications for the health of older adults. Strength and balance interventions significantly reduce the risk of falls; however, patients seldom perform the dose of exercise that is required based on evidence. Health professionals play an important role in supporting older adults as they perform and progress in their exercises. Teleconferencing could enable health professionals to support patients more frequently, which is important in exercise behavior. OBJECTIVE This study aims to examine the overall concept and acceptability of teleconferencing for the delivery of falls rehabilitation with health care professionals and older adults and to examine the usability, acceptability, and feasibility of teleconferencing delivery with health care professionals and patients. METHODS There were 2 stages to the research: patient and public involvement workshops and usability and feasibility testing. A total of 2 workshops were conducted, one with 5 health care professionals and the other with 8 older adults from a community strength and balance exercise group. For usability and feasibility testing, we tested teleconferencing both one-to-one and in small groups on a smartphone with one falls service and their patients for 3 weeks. Semistructured interviews and focus groups were used to explore acceptability, usability, and feasibility. Focus groups were conducted with the service that used teleconferencing with patients and 2 other services that received only a demonstration of how teleconferencing works. Qualitative data were analyzed using the framework approach. RESULTS In the workshops, the health care professionals thought that teleconferencing provided an opportunity to save travel time. Older adults thought that it could enable increased support. Safety is of key importance, and delivery needs to be carefully considered. Both older adults and health care professionals felt that it was important that technology did not eliminate face-to-face contact. There were concerns from older adults about the intrusiveness of technology. For the usability and feasibility testing, 7 patients and 3 health care professionals participated, with interviews conducted with 6 patients and a focus group with the health care team. Two additional teams (8 health professionals) took part in a demonstration and focus group. Barriers and facilitators were identified, with 5 barriers around reliability due to poor connectivity, cost of connectivity, safety concerns linked to positioning of equipment and connectivity, intrusiveness of technology, and resistance to group teleconferencing. Two facilitators focused on the positive benefits of increased support and monitoring and positive solutions for future improvements. CONCLUSIONS Teleconferencing as a way of delivering fall prevention interventions can be acceptable to older adults, patients, and health care professionals if it works effectively. Connectivity, where there is no Wi-Fi provision, is one of the largest issues. Therefore, local infrastructure needs to be improved. A larger usability study is required to establish whether better equipment for delivery improves usability. CLINICALTRIAL

scholarly journals Integrating Healthcare Education for Best Practice – A Question of which Health Professionals Between Paediatric and adult Chronic Kidney Disease (CKD) Patients – Topic Tagging and what is ‘Deemed’ Clinically Relevant Context – A Qualitative Perspective

2021 ◽  
pp. 1-17
Author(s):  
Muhammad SN ◽  
◽  
Orzechowska K ◽  
Gardener J ◽  
Gardner V ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Support Groups ◽  
Health Professionals ◽  
Best Practice ◽  
Qualitative Data ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Long Term Conditions ◽  
Educational Gaps

Education and information seeking is pinnacle for patients with Long-Term Conditions (LTCs) like Chronic Kidney Disease (CKD) to take ownership of health and disease and navigate healthcare between health sectors. Patient and Public Involvement (PPI) are key to help understand gaps in health education. Aims/ Objectives: 1) Involving patients between two support groups to help understand which topics and subjects are pertinent to CKD patients; 2) Involving patients to understand whether, retrospectively there has been an educational neglect in healthcare; and 3) To understand how healthcare and education for CKD patients could be more integrated. Methods: Two PPI workshops were implemented (May and June 2019) after reviewing NIHR INVOLVE best practice guidelines. Fourteen (14) topic tags were applied over 1-month (March and April 2020) between the Renal Patient Support Group (RPSG) (est.2009) and the Kidney Disease and Renal Support (KDARs) (est.2014) for Kids platforms. Ethics: Group disclaimers encouraged informed consent. GDPR (2018) guidelines were implemented to ensure best practice surrounding confidentiality and data protection. Results: Thematic Analysis was used to highlight findings, according to over-arching themes having used Nvivo-12 software to code and help understand where there are healthcare educational inefficiencies. Five themes were identified through this study including 1) Using Different Mediums to Collect Qualitative Data and Understanding Healthcare; 2) Reliability and Validity of using the Internet to Collect Data; 3) Healthcare, Patient and Public Involvement and Maintaining Confidentiality through Online Methods to collect Qualitative Data; 4) Advantages, Disadvantages and Limitations to Online Data Collection and Peer Support Groups and 5) Using Qualitative Methodology to Understand Educational Needs for CKD Patients. Discussion: Wider Allied Health Professionals (AHPs) could increasingly find themselves taking on roles, particularly where involvement is increasingly dependent bridging educational gaps and ‘alleviating misinformation’ through technology and ‘online spaces’. Conclusion: This is the first UK retrospective study that examines educational gaps between online paediatric and adult CKD patients close to two decades (16 years), and highlights where further PPI-focused research would help understand where healthcare requires investment

scholarly journals One-to-One and Group-Based Teleconferencing for Falls Rehabilitation: Usability, Acceptability, and Feasibility Study

10.2196/19690 ◽  
2021 ◽  
Vol 8 (1) ◽  
pp. e19690
Author(s):  
Helen Hawley-Hague ◽  
Carlo Tacconi ◽  
Sabato Mellone ◽  
Ellen Martinez ◽  
Lorenzo Chiari ◽  
...  
Keyword(s):  
Older Adults ◽  
Health Care ◽  
Focus Group ◽  
Focus Groups ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Feasibility Testing ◽  
One To One

Background Falls have implications for the health of older adults. Strength and balance interventions significantly reduce the risk of falls; however, patients seldom perform the dose of exercise that is required based on evidence. Health professionals play an important role in supporting older adults as they perform and progress in their exercises. Teleconferencing could enable health professionals to support patients more frequently, which is important in exercise behavior. Objective This study aims to examine the overall concept and acceptability of teleconferencing for the delivery of falls rehabilitation with health care professionals and older adults and to examine the usability, acceptability, and feasibility of teleconferencing delivery with health care professionals and patients. Methods There were 2 stages to the research: patient and public involvement workshops and usability and feasibility testing. A total of 2 workshops were conducted, one with 5 health care professionals and the other with 8 older adults from a community strength and balance exercise group. For usability and feasibility testing, we tested teleconferencing both one-to-one and in small groups on a smartphone with one falls service and their patients for 3 weeks. Semistructured interviews and focus groups were used to explore acceptability, usability, and feasibility. Focus groups were conducted with the service that used teleconferencing with patients and 2 other services that received only a demonstration of how teleconferencing works. Qualitative data were analyzed using the framework approach. Results In the workshops, the health care professionals thought that teleconferencing provided an opportunity to save travel time. Older adults thought that it could enable increased support. Safety is of key importance, and delivery needs to be carefully considered. Both older adults and health care professionals felt that it was important that technology did not eliminate face-to-face contact. There were concerns from older adults about the intrusiveness of technology. For the usability and feasibility testing, 7 patients and 3 health care professionals participated, with interviews conducted with 6 patients and a focus group with the health care team. Two additional teams (8 health professionals) took part in a demonstration and focus group. Barriers and facilitators were identified, with 5 barriers around reliability due to poor connectivity, cost of connectivity, safety concerns linked to positioning of equipment and connectivity, intrusiveness of technology, and resistance to group teleconferencing. Two facilitators focused on the positive benefits of increased support and monitoring and positive solutions for future improvements. Conclusions Teleconferencing as a way of delivering fall prevention interventions can be acceptable to older adults, patients, and health care professionals if it works effectively. Connectivity, where there is no Wi-Fi provision, is one of the largest issues. Therefore, local infrastructure needs to be improved. A larger usability study is required to establish whether better equipment for delivery improves usability.

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