scholarly journals From Passive Patient to Engaged Partner: My Journey With Parkinson Disease (Preprint)

2018 ◽  
Author(s):  
Richard Higgins ◽  
Maureen Hennessey
Keyword(s):  
Health Care ◽  
Parkinson Disease ◽  
Health Care Professionals ◽  
Lessons Learned ◽  
Treatment Team ◽  
Participatory Medicine ◽  
Patient Narrative ◽  
The Way

UNSTRUCTURED This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

scholarly journals From Passive Patient to Engaged Partner: My Journey With Parkinson Disease

10.2196/12566 ◽  
2020 ◽  
Vol 12 (2) ◽  
pp. e12566
Author(s):  
Richard Higgins ◽  
Maureen Hennessey
Keyword(s):  
Health Care ◽  
Parkinson Disease ◽  
Health Care Professionals ◽  
Lessons Learned ◽  
Treatment Team ◽  
Participatory Medicine ◽  
Patient Narrative ◽  
The Way

This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

Are Communities Willing to Transition Into Learning Health Care Communities? A Community-Based Participatory Evaluation of Stakeholders’ Receptivity

2021 ◽  
pp. 104973232199864
Author(s):  
Nabil Natafgi ◽  
Olayinka Ladeji ◽  
Yoon Duk Hong ◽  
Jacqueline Caldwell ◽  
C. Daniel Mullins
Keyword(s):  
Health Care ◽  
Health Care Delivery ◽  
Health Care Professionals ◽  
Care Delivery ◽  
Lessons Learned ◽  
Community Members ◽  
Community Based ◽  
Care Community ◽  
Care Experience ◽  
National Initiative

This article aims to determine receptivity for advancing the Learning Healthcare System (LHS) model to a novel evidence-based health care delivery framework—Learning Health Care Community (LHCC)—in Baltimore, as a model for a national initiative. Using community-based participatory, qualitative approach, we conducted 16 in-depth interviews and 15 focus groups with 94 participants. Two independent coders thematically analyzed the transcripts. Participants included community members (38%), health care professionals (29%), patients (26%), and other stakeholders (7%). The majority considered LHCC to be a viable model for improving the health care experience, outlining certain parameters for success such as the inclusion of home visits, presentation of research evidence, and incorporation of social determinants and patients’ input. Lessons learned and challenges discussed by participants can help health systems and communities explore the LHCC aspiration to align health care delivery with an engaged, empowered, and informed community.

scholarly journals Exploring the feasibility of a network of organizations for pain rehabilitation: what are the lessons learned?

2020 ◽  
Author(s):  
Cynthia Lamper ◽  
Ivan PJ Huijnen ◽  
Mariëlle EAL Kroese ◽  
Albère J Köke ◽  
Gijs Brouwer ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Large Scale ◽  
Critical Mass ◽  
Implementation Strategies ◽  
Daily Practice ◽  
Lessons Learned ◽  
Integration Of Care ◽  
Treatment Protocols ◽  
Rehabilitation Care

Abstract Background and aims: Integration of care is lacking for chronic musculoskeletal pain (CMP) patients. Network Pain Rehabilitation Limburg (NPRL), a transmural health care network, has been designed to provide integrated rehabilitation care from a biopsychosocial perspective to improve patients’ levels of functioning. This feasibility study aims to provide insight into barriers and facilitators for the development, implementation, and transferability of NPRL.Methods: This study was conducted with a three-phase iterative and incremental design from October 2017 to October 2018. NPRL comprises two rehabilitation practices, and three local primary care networks, with a general practitioner together with, a mental health practice nurse, and a physiotherapist or exercise therapist. These stakeholders with a random sample of participating patients took part in evaluations, consisting of interviews, focus groups, and observations. Field notes and observations were recorded during meetings. The Consolidated Framework for Implementation Research guided data collection and analysis. Results were used to refine the next phase.Results: According to health care professionals (HCPs), guidelines and treatment protocols facilitate consistency and transparency in collaboration, biopsychosocial language, and treatment. One barrier is stigmatization of CMP in society. Non-participating HCPs’ treatment approaches are often more biomedical than biopsychosocial, causing patients to resist participating in NPRL. The current organization of health care, with cultural, structural, and financial aspects, acts as a barrier, complicating implementation between and within practices. HCPs preferred the iterative, bottom-up strategy. A critical mass of participating organizations is needed for proper implementation.Conclusion: NPRL is feasible in daily practice if barriers are overcome and facilitators of development, implementation, and transferability are promoted. These findings will be used to refine NPRL. A large-scale process and effect evaluation will be performed. Our implementation strategies and results may assist other health care organizations aspiring to implement a transmural network using a similar model.

Empirical exploration of brilliance in health care: perceptions of health professionals

2017 ◽  
Vol 41 (3) ◽  
pp. 336 ◽  
Author(s):  
Leila Karimi ◽  
Ann Dadich ◽  
Liz Fulop ◽  
Sandra G. Leggat ◽  
Jiri Rada ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Delivery ◽  
Health Professionals ◽  
Health Care Professionals ◽  
Management Practices ◽  
Health Management ◽  
Care Delivery ◽  
Lessons Learned ◽  
Lexical Analysis ◽  
Professional Perspective

Objective The aim of the present study was to develop a positive organisational scholarship in health care approach to health management, informed by health managers and health professionals’ experiences of brilliance in health care delivery. Methods A sample of postgraduate students with professional and/or management experience within a health service was invited to share their experiences of brilliant health services via online discussions and a survey running on the SurveyMonkey platform. A lexical analysis of student contributions was conducted using the individual as the unit of analysis. Results Using lexical analysis, the examination of themes in the concept map, the relationships between themes and the relationships between concepts identified ‘care’ as the most important concept in recognising brilliance in health care, followed by the concepts of ‘staff’ and ‘patient’. Conclusions The research presents empirical material to support the emergence of an evidence-based health professional perspective of brilliance in health management. The findings support other studies that have drawn on both quantitative and qualitative materials to explore brilliance in health care. Pockets of brilliance have been previously identified as catalysts for changing health care systems. Both quality, seen as driven from the outside, and excellence, driven from within individuals, are necessary to produce brilliance. What is known about the topic? The quest for brilliance in health care is not easy but essential to reinvigorating and energising health professionals to pursue the highest possible standards of health care delivery. What does this paper add? Using an innovative methodology, the present study identified the key drivers that health care professionals believe are vital to moving in the direction of identifying brilliant performance. What are the implications for practitioners? This work presents evidence on the perceptions of leadership and management practices associated with brilliant health management. Lessons learned from exceptionally well-delivered services contain different templates for change than those dealing with failures, errors, misconduct and the resulting negativity.

Improving care coordination using organisational routines

2016 ◽  
Vol 30 (1) ◽  
pp. 85-108 ◽  
Author(s):  
Thim Prætorius
Keyword(s):  
Health Care ◽  
Care Coordination ◽  
Health Care Professionals ◽  
Explanatory Power ◽  
Care Pathways ◽  
Content Type ◽  
Starting Point ◽  
Organisational Routines ◽  
Coordination Change ◽  
The Way

Purpose – The purpose of this paper is to systematically apply theory of organisational routines to standardised care pathways. The explanatory power of routines is used to address open questions in the care pathway literature about their coordinating and organising role, the way they change and can be replicated, the way they are influenced by the organisation and the way they influence health care professionals. Design/methodology/approach – Theory of routines is systematically applied to care pathways in order to develop theoretically derived propositions. Findings – Care pathways mirror routines by being recurrent, collective and embedded and specific to an organisation. In particular, care pathways resemble standard operating procedures that can give rise to recurrent collective action patterns. In all, 11 propositions related to five categories are proposed by building on these insights: care pathways and coordination, change, replication, the organisation and health care professionals. Research limitations/implications – The paper is conceptual and uses care pathways as illustrative instances of hospital routines. The propositions provide a starting point for empirical research. Practical implications – The analysis highlights implications that health care professionals and managers have to consider in relation to coordination, change, replication, the way the organisation influences care pathways and the way care pathways influence health care professionals. Originality/value – Theory on organisational routines offers fundamental, yet unexplored, insights into hospital processes, including in particular care coordination.

scholarly journals Adapting the Advanced Cardiac Life Support for the Experienced Provider (ACLS-EP) course for emergency care education in Rwanda

2011 ◽  
Vol 3 (1) ◽  
Author(s):  
William E. Cayley Jr
Keyword(s):  
Health Care ◽  
Emergency Care ◽  
Health Care Professionals ◽  
Life Support ◽  
Advanced Cardiac Life Support ◽  
Training Programme ◽  
Lessons Learned ◽  
Care Education ◽  
African Setting ◽  
Case Based

The Advanced Cardiac Life Support for the Experienced Provider (ACLS-EP) course uses a case-based curriculum to teach emergency resuscitation principles to experienced health care professionals. This article describes the adaptation of the ACLS-EP curriculum to be used in a family medicine training programme in Rwanda, including lessons learned and recommendations for future use of this material for emergency care education in the African setting.

scholarly journals Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges (Preprint)

2018 ◽  
Author(s):  
Åsa Revenäs ◽  
Helena Hvitfeldt Forsberg ◽  
Emma Granström ◽  
Carolina Wannheden
Keyword(s):  
Health Care ◽  
Parkinson Disease ◽  
Health Care Professionals ◽  
Information Exchange ◽  
Chronic Conditions ◽  
Qualitative Content Analysis ◽  
Self Care ◽  
Time Investment ◽  
Health And Social Care ◽  
Ehealth Service

BACKGROUND The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals’ and patients’ resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties’ specific needs for the service to be successful. Research on participants’ experiences of participating in co-design sessions is scarce. OBJECTIVE The aim of this study was to describe different stakeholders’ (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. METHODS We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers’ diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. RESULTS Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents’ perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. CONCLUSIONS Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design.

scholarly journals The Views and Needs of People With Parkinson Disease Regarding Wearable Devices for Disease Monitoring: Mixed Methods Exploration (Preprint)

2021 ◽  
Author(s):  
Lorna Kenny ◽  
Kevin Moore ◽  
Clíona O' Riordan ◽  
Siobhan Fox ◽  
John Barton ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Parkinson Disease ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Technology Use ◽  
Wearable Devices ◽  
Wearable Device ◽  
Disease Monitoring ◽  
Perceived Benefits

BACKGROUND Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities. OBJECTIVE This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management. METHODS This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach. RESULTS Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption. CONCLUSIONS Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease–related health barriers and the users’ confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management.

scholarly journals The Views and Needs of People With Parkinson Disease Regarding Wearable Devices for Disease Monitoring: Mixed Methods Exploration

10.2196/27418 ◽  
2022 ◽  
Vol 6 (1) ◽  
pp. e27418
Author(s):  
Lorna Kenny ◽  
Kevin Moore ◽  
Clíona O' Riordan ◽  
Siobhan Fox ◽  
John Barton ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Group ◽  
Parkinson Disease ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Technology Use ◽  
Wearable Devices ◽  
Wearable Device ◽  
Disease Monitoring ◽  
Perceived Benefits

Background Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities. Objective This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management. Methods This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach. Results Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption. Conclusions Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease–related health barriers and the users’ confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management.

scholarly journals Understanding Medical Decision-making in Prostate Cancer Care

2018 ◽  
Vol 12 (5) ◽  
pp. 1635-1647 ◽  
Author(s):  
Rachel Thera ◽  
Dr. Tracey Carr ◽  
Dr. Gary Groot ◽  
Nicole Baba ◽  
Dr. Kunal Jana
Keyword(s):  
Prostate Cancer ◽  
Health Care ◽  
Decision Making ◽  
Health Care Professionals ◽  
Treatment Options ◽  
Health Care Team ◽  
Medical Decision ◽  
Shared Decision ◽  
System Quality ◽  
The Way

The availability of several treatment options for prostate cancer creates a situation where patients may need to come to a shared decision with their health-care team regarding their care. Shared decision-making (SDM) is the concept of a patient and a health-care professional collaborating to make decisions about the patient’s treatment course. Nurse navigators (NNs) are health-care professionals often involved in the SDM process. The current project sought to evaluate the way in which patients with prostate cancer make decisions regarding their care and to determine patients’ perspectives of the role of the NN in the SDM process. Eleven participants were recruited from the Prostate Assessment Centre by a NN. They were interviewed via telephone and their responses were analyzed using thematic analysis. Five interacting factors were determined to influence the way participants made decisions including level of anxiety, desire to maintain normalcy, support system quality, exposure to cancer narratives, and extent of practical concerns. NNs were found to increase knowledge, decrease indecision, and provide reassurance for participants. Based on the beneficial aspects of NN interaction reported in this study, the use of NNs in SDM programs should be encouraged. The results of the study demonstrate the complexity of the decision-making process when it comes to prostate cancer treatment. The factors elucidated in the study should be considered during the development and implementation of prostate cancer SDM programs.

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