Patient & public involvement for inherited cardiac conditions

Abstract Funding Acknowledgements National Institute for Health Research OnBehalf King"s Health Partners Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC) group Background Inherited Cardiac Conditions (ICCs) affect up to 1:200 of the population and is the leading cause of sudden death in the under 40s. Research into developing interventions to support patients as they adjust to their diagnosis and genetic carrier status is underway; an example of which is the Psychoeducational Intervention Supporting patients with an ICC (PISICC) study. To ensure the appropriateness, acceptability and applicability of the intervention, patients and the public were involved in the development of PISICC intervention. Purpose To ensure the relevance and improve the quality of the PISICC study, Patient & Public Involvement for Inherited Cardiac Conditions (PPIICC) group was organised to guide the research project as this progressed through the three phases of the Medical Research Council framework for developing complex interventions. Methods Utilising INVOLVE guidelines, the PPIICC group was initiated by the researcher by inviting patients and families attending a local ICC clinic, members of the patient support group, Cardiomyopathy UK; and members of the existing PPI group of the local biomedical research centre. Ground rules, terms of engagement and provisions for meetings such as rooms, reimbursements for transport costs, childcare and compensation for time was established. The PPIICC group met up to three times per year within a three-year period with electronic exchanges in between. Members gave individual feedback to draft study materials and their views shaped the final versions. A modified Delphi study was used for the development of the PISICC intervention model. Figure 1 illustrates the activities undertaken by the group. Results The involvement of the PPIICC group throughout the development of the PISICC intervention model has contributed to the successful recruitment of 32 participants and completion of the qualitative study in Phase 1. In Phase 2 the group had a crucial role in ensuring that the education component of the PISICC intervention included advice on medication and physical activity; and for the group component of the intervention to include a mixed age group to enable sharing of varied experiences. In planning for Phase 3, the PPIICC group helped ensure that the trial processes for the planned feasibility study were not burdensome to participants which supported its full ethical approval by the UK Health Research Authority. Conclusions Patients and their families played an important role in designing the PISICC study. So far, their involvement has resulted in reaching recruitment targets for Phase 1 of the study, the development of a patient-informed psychoeducational intervention model and feasibility study protocol.

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Final report on the public involvement process phase 1, Monitored Retrievable Storage Facility Feasibility Study

10.2172/6910490 ◽

1992 ◽

Author(s):

L Moore ◽

C Shanteau

Keyword(s):

Feasibility Study ◽

Public Involvement ◽

Phase 1 ◽

Final Report ◽

Storage Facility ◽

The Public ◽

Monitored Retrievable Storage

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Developing a fatigue programme: Protocol for the Nottingham Fatigue After Stroke (NotFAST2) study

British Journal of Occupational Therapy ◽

10.1177/0308022620944797 ◽

2020 ◽

Vol 83 (11) ◽

pp. 674-679

Author(s):

Avril Drummond ◽

Joanne Ablewhite ◽

Laura Condon ◽

Roshan das Nair ◽

Amanda Jones ◽

...

Keyword(s):

Focus Groups ◽

Psychological Functioning ◽

Public Involvement ◽

Negative Impact ◽

Controlled Trial ◽

Phase 1 ◽

Management Programme ◽

Study Patient ◽

Post Stroke ◽

Fatigue Management

Introduction Post-stroke fatigue is common and is one of the most distressing symptoms after stroke. It has a negative impact on physical, social and psychological functioning; it is also associated with poor outcomes and increased mortality. The effective management of post-stroke fatigue is therefore regarded as a clinical priority. Method This study will use a mixed-methods design with three overlapping phases. Phase 1 will be a survey of existing fatigue management within the United Kingdom. In phase 2, interviews and focus groups will be conducted with stroke survivors with fatigue, carers and clinicians to determine strategies used to manage fatigue successfully. In phase 3, data from phases 1 and 2 will contribute to the co-design of a fatigue management programme with the NotFAST2 study Patient and Public Involvement group. This will be further refined through subsequent focus groups, which will include those with fatigue associated with other health conditions. Results Survey data will be analysed using descriptive statistics. Interview and focus group data will be analysed using a framework approach. Conclusion Post-stroke fatigue requires a comprehensive management programme necessitating input from key stakeholders. A post-stroke fatigue programme will be developed which will be tested in a future randomised controlled trial.

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P074 Insights into creating a virtual patient and public involvement initiative

Rheumatology ◽

10.1093/rheumatology/keab247.072 ◽

2021 ◽

Vol 60 (Supplement_1) ◽

Author(s):

Eleanor Hawkins ◽

Tracy Hyndman ◽

Raj Amarnani ◽

James Kimpton ◽

Su-Ann Yeoh ◽

...

Keyword(s):

Biomedical Research ◽

Health Research ◽

Patient Involvement ◽

Public Involvement ◽

Patient And Public Involvement ◽

Research Centre ◽

Face To Face ◽

London Hospital ◽

University College ◽

University College London

Abstract Background/Aims Patient and public involvement (PPI) initiatives are important to ensure patient-centered research. However, traditional focus groups can present challenges including the recruitment and retention of patient partners. Additional challenges to patient involvement have also arisen due to the coronavirus pandemic (COVID-19). The University College London (UCL) Patient Partners in Rheumatology Research initiative has been developed to explore novel ways to boost patient involvement and foster an active collaboration between basic researchers and patient partners. Methods Two online surveys were designed to obtain information with regards to the expectations and practicalities of this initiative. One survey was sent to patients who had registered an interest in being patient partners and the other survey to rheumatology researchers at UCL and University College London Hospital (UCLH). Results We received responses from 25 researchers and 21 patients. The majority of patients who responded (71%) had not previously been involved in PPI. Most of the researchers (84%) had previously utilised PPI, however 20% of those had some difficulty accessing it. Most patients (86%) were interested in becoming a patient partner. Amongst those with reservations, one stated that “I don't think I have the qualifications to be involved with scientists and researchers”. Over half of patients (52%) were happy to participate in PPI more than five times a year and most researchers (84%) expressed that five times a year was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to social restrictions because of COVID-19, we asked both patients and researchers their preferred mode of meeting. Both groups favoured a mixed (virtual and face to face) meeting arrangement (81% for patients and 68% for researchers). A third of patients (38%) expressed that they would need technical assistance accessing a virtual meeting. Almost all patients (95%) were happy to contribute to lay summary reviews remotely via email. Conclusion Based on the insights gained from the survey results, our PPI initiative meetings will be hosted in a hybrid virtual/face to face format. These will be held at a time and frequency that is convenient for the patient partners to increase participation across wider demographics. This survey has highlighted that we have to be mindful of certain patient perceptions of PPI which creates a barrier to patient involvement and that some individuals may require further support in accessing virtual meetings. By designing a PPI initiative that creatively addressed the needs of both the researchers and patient partners we hope to create a platform for productive dialogue and collaboration to ensure patient-centred research, despite the changes brought about by the COVID-19 pandemic. Disclosure E. Hawkins: Other; funded by National Institute of Health Research, Clinical Research Network. T. Hyndman: None. R. Amarnani: None. J. Kimpton: None. S. Yeoh: Other; University College London Hospital National Institute of Health Research Biomedical Research Centre, UCLH Charities, Royal College of Physicians and Rosetrees Trust. M. Castelino: Other; University College London Hospitals National Institute for Health Research Biomedical Research Centre.

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Final report on the public involvement process phase 1, Monitored Retrievable Storage Facility Feasibility Study

10.2172/10106379 ◽

1992 ◽

Author(s):

L Moore ◽

C Shanteau

Keyword(s):

Feasibility Study ◽

Public Involvement ◽

Phase 1 ◽

Final Report ◽

Storage Facility ◽

The Public ◽

Monitored Retrievable Storage

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Feasibility Study on a (252)Cf Plasma Desorption Imaging Mass Detector. Phase 1.

10.21236/ada299001 ◽

1995 ◽

Author(s):

Alan M. Levine ◽

Nicholas W. Ritchie

Keyword(s):

Feasibility Study ◽

Phase 1 ◽

Plasma Desorption ◽

Mass Detector

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Reflective insights from developing a palliative care children and young people’s advisory group

Palliative Medicine ◽

10.1177/0269216320976035 ◽

2021 ◽

pp. 026921632097603

Author(s):

Anna Roach ◽

Debbie Braybrook ◽

Steve Marshall

Keyword(s):

Palliative Care ◽

Young People ◽

Health Research ◽

School Health ◽

Public Involvement ◽

After School ◽

Advisory Group ◽

Research Projects ◽

Children And Young People ◽

Care Research

Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research. Aim: To plan and deliver a Young People’s Advisory Group in palliative care and health research at a secondary school. Findings: Attending an after-school ‘Health and Social Research Methods Club’ for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group. Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People’s Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.

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Involving frail older patients in identifying outcome measures for transitional care—a feasibility study

Research Involvement and Engagement ◽

10.1186/s40900-021-00288-9 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Troels Kjærskov Hansen ◽

Annesofie Lunde Jensen ◽

Else Marie Damsgaard ◽

Tone Maria Mørck Rubak ◽

Mikkel Erik Juul Jensen ◽

...

Keyword(s):

Health Care ◽

Outcome Measures ◽

Feasibility Study ◽

Thematic Analysis ◽

Older Patients ◽

Public Involvement ◽

Transitional Care ◽

Care Transitions ◽

Level Of Involvement ◽

Relevant Outcome

Abstract Background During care transitions, the older (75+) patient’s agenda can easily be missed. To counteract this, involving patients in shared clinical decision making has proven to be of great value. Likewise, involving patients and other stakeholders as researchers is gaining ground. Patient and public involvement (PPI) in research entails many benefits, for example, by bringing further insight from those with lived experiences of being ill. There are various challenges associated with involving some older patients, for example frailty, cognitive impairment and other chronic illnesses. To the best of our knowledge, there are only a few examples of initiatives involving older patients beyond research participation. The feasibility of involving frail older patients during an ongoing care transition from hospital to primary health care remains unknown. To investigate the feasibility of including older frail patients, their relatives and health care professionals (HCPs) as co-researchers, we established a study with increasingly demanding levels of patient involvement to identify relevant outcome measures for future transitional care research. Methods The study was a pragmatic, qualitative feasibility study. The involved individuals were frail older patients, their relatives and HCPs. Patients and their relatives were interviewed, while the interviewer made reflective notes. A thematic analysis was made. Relatives and HCPs discussed the themes to identify relevant outcome measures and potentially co-create new patient-reported outcome measures (PROMs) for use in future transitional care studies. The feasibility was evaluated according to six involvement steps. The level of involvement was evaluated using the five-levelled Health Canada Public Involvement Continuum (HCPIC). Results In total, eight patients, five relatives and three HCPs were involved in the study. Patients were involved in discussing care transitions (HCPIC level 3), while some relatives were engaged (HCPIC level 4) in forming PROMs. The partnership level of involvement (HCPIC level 5) was not reached. The thematic analysis and the subsequent theme discussion successfully formed PROMs. The key PROMs were related to care, transparency and the relatives’ roles in the transitional care process. Conclusions When applying a pragmatic involvement approach, frail older patients can be successfully involved in identifying relevant transitional care outcome measures; however, involving these patients as fellow researchers seems infeasible. To maintain involvement, supportive relatives are essential. Useful experiences for future research involvement of this vulnerable group were reported, arguing that patient participation has the potential to become inherent in future geriatric research.

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