scholarly journals “We are very individual”: Anticipated effects on stroke survivors of using their person-generated health data (Preprint)

2019 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Care ◽  
Health Services ◽  
Focus Groups ◽  
Health Care Providers ◽  
Digital Health ◽  
Stroke Care ◽  
Health Data ◽  
Stroke Survivors ◽  
Care Providers ◽  
Patient Reported

BACKGROUND Person-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may have changes in their engagement with their own health care, their relationship with their healthcare providers, and their sense of social support and connectedness. Research into evaluating those reported effects however, has not kept up; thus a method for developing patient-reported outcome measures (PROMs) of utilising PGHD, called the PROM-PGHD Development Method, was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems (K-SRS). A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform health care providers on decisions about stroke care, and thereby improve health outcomes. Moreover, eliciting the input of stroke survivors is important because there could be differences in their perspectives and that of their care providers, regarding treatment and management. OBJECTIVE This paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology. METHODS This study gathered the perspectives of six stroke survivors and five clinicians through three focus groups and three interviews, recruited for convenience. In the stroke survivors’ focus groups, participants were asked to give their perspectives on how using the PGHD from Jintronix may affect their outcomes; while in the clinicians’ focus group, clinicians were asked for their perspectives on how PGHD use may affect the outcomes of stroke survivors. Participants were also asked questions intended to encourage them to comment on the initial items of the PROM-PGHD. Deductive thematic analysis was performed. RESULTS Survivors and clinicians had varying perspectives in three of the six themes presented, and puts emphasis on the importance of allowing stroke survivors to participate in the evaluation of digital health services. However, the potential for tensions to occur between the needs and preferences of patients and their care providers could be reduced through a similar understanding of health treatment goals. This paper has further demonstrated that outcomes of utilising PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative, and nil effects on their health behaviours. CONCLUSIONS This study is the first to gather and compare the perspectives of stroke survivors and clinicians, in order to develop a PROM-PGHD for a simulated rehabilitation system. The reported PGHD utilisation outcomes would directly inform the development of a PROM-PGHD for K-SRS, of which this paper is a key step. Additionally, they could help inform health care providers on decisions about stroke care. This is particularly relevant in the area of poststroke simulated rehabilitation technologies.

scholarly journals ‘We are very individual’: anticipated effects on stroke survivors of using their person-generated health data

2020 ◽  
Vol 27 (3) ◽  
pp. e100149
Author(s):  
Gerardo Luis Dimaguila ◽  
Frances Batchelor ◽  
Mark Merolli ◽  
Kathleen Gray
Keyword(s):  
Health Services ◽  
Information Technologies ◽  
Digital Health ◽  
Healthcare Providers ◽  
Health Behaviours ◽  
Stroke Care ◽  
Health Data ◽  
Care Process ◽  
Stroke Survivors ◽  
Patient Reported

BackgroundPerson-generated health data (PGHD) are produced by people when they use health information technologies. People who use PGHD may experience changes in their health and care process, such as engagement with their own healthcare, and their sense of social support and connectedness. Research into evaluating those reported effects has not kept up; thus, a method for measuring PGHD outcomes was previously designed and applied to the exemplar case of Kinect-based stroke rehabilitation systems. A key step of the method ensures that the patient’s voice is included. Allowing stroke survivors to participate in the development and evaluation of health services and treatment can inform healthcare providers on decisions about stroke care, and thereby improve health outcomes.ObjectiveThis paper presents the perspectives of stroke survivors and clinicians on the anticipated effects of stroke survivors’ use of PGHD from a poststroke simulated rehabilitation technology.MethodsThis study gathered the perspectives of stroke survivors and clinicians through three focus groups and three interviews, recruited for convenience. Participants were also asked questions intended to encourage them to comment on the initial items of the patient-reported outcome measure-PGHD. Deductive thematic analysis was performed.ResultsThis paper has further demonstrated that outcomes of using PGHD can be measured. For instance, stroke survivors described that using PGHD could result in positive, negative and nil effects on their health behaviours. Survivors and clinicians had varying perspectives in three of the six themes presented, and emphasise the importance of allowing stroke survivors to participate in the evaluation of digital health services.

Abstract WP408: Tacls: Taking Action for Optimal Community and Long Term Stroke Care

Stroke ◽  
2017 ◽  
Vol 48 (suppl_1) ◽  
Author(s):  
Theresa L Green ◽  
Patrice Lindsay
Keyword(s):  
Health Care ◽  
Acute Stroke ◽  
Health Care Providers ◽  
Stroke Care ◽  
Residential Aged Care ◽  
Stroke Survivors ◽  
Care Providers ◽  
Community Based ◽  
Taking Action

Introduction: In Canada, approximately 12% of acute stroke patients are admitted to long-term care (LTC; or residential aged care) facilities following an acute stroke event. An additional 20-30% of patients are discharged home from hospital with referral for community-based homecare. Training programs for health care providers in these settings is variable and at times inconsistent with best practices. Internationally, focus is now shifting from a predominant inpatient acute care focus, to one encompassing ongoing care and support in the community for people living with stroke. In 2015, an educational resource called Taking Action for Optimal Community & Long Term Stroke Care (TACLS) was launched across Canada to ensure the appropriate knowledge and skills of front line care providers for stroke survivors in community and LTC facilities; the focus of this resource is on rehabilitation and recovery. Methods: The purpose of this interactive session is to introduce the TACLS resource and to engage health professionals in an examination of current international community based rehabilitation and recovery programs. The discussion/workshop will allow participants to examine, compare and contrast components of the TACLS program with programs being developed or offered elsewhere. Results: As health care providers helping stroke survivors live well and longer means investing in the use of best practice tools and resources that fit the local context and organizational practices. Bringing together international opinions and observations around post-stroke community care will allow cross-collaboration and inter-professional networking opportunities that ultimately will benefit patients living with stroke in community based settings. Discussion: As care shifts from hospital to community based settings, the importance of tools available to support stroke survivors in this area of the care continuum is essential. In Canada, utilizing the HSF education resource (TACLS) provides information to support community based health care providers working with people who have had a stroke in helping them achieve optimal outcomes, regain their best level of functioning, and live meaningful lives.

Abstract 3123: Toolkit for Return to Work after Stroke

Stroke ◽  
2012 ◽  
Vol 43 (suppl_1) ◽  
Author(s):  
Paula Gilmore ◽  
John Barry ◽  
Jeff Blanchard ◽  
Shannon Howson ◽  
Martha Korzycki
Keyword(s):  
Health Care ◽  
Return To Work ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Service Providers ◽  
Stroke Care ◽  
Face Validity ◽  
Stroke Survivors ◽  
Care Providers ◽  
Negative Impacts

Background: The Southwestern Ontario (SWO) Stroke Network completed community engagement forums with stroke survivors, their loved ones and community service providers to determine barriers to living fully in the community after stroke. One of the priorities identified in the forums was the need for "return to work" services. Currently, 10 % of stroke survivors are people under the age of 50 and in the prime of their working life. Research indicates that return to work rates after stroke are as low as 7%. However, employment is one of the most important social roles that a person fulfills and not working has negative impacts on one’s overall quality of life, health, finances, social isolation and self-efficacy. Stroke survivors and health care professionals need to be aware of how to navigate the process of return to work after stroke. Purpose: A toolkit of resources has been developed to assist stroke survivors and health care professionals navigate the process of return to work after stroke. Methods: A working group comprised of experts in vocational rehabilitation and stroke care developed a toolkit of resources to educate and assist stroke survivors and health care professionals navigate the complex system of return to work. The resources have undergone an external review by health care professionals and stroke survivors. Results: Resources developed include a self assessment guide. It assesses five critical areas to return to work by evaluating the stroke survivor’s current abilities against the demands of the job and is designed to help focus the individual’s recovery efforts. Algorithms on how to navigate the system of return to work, including how to traverse the system of financial benefits and questions to ask employers and information on community financial supports were developed. A literature review and inventories outlining services for persons with stroke, who are preparing to re-enter the workforce, are part of the toolkit. Health care providers and stroke survivors have confirmed the face to face validity of the resources. Conclusions: Research indicates that stroke survivors should be encouraged to evaluate their potential of returning to work and should receive support from knowledgeable professionals regarding return to work as soon as possible after stroke. This toolkit is intended to support stroke survivors and their health care professionals to navigate the system for a successful return to work. Next steps include the development of a website to assist with return to work.

Perceptions of “Male Sensitive” Health Services Among Men in Trinidad and Tobago

2020 ◽  
pp. 104365962096861
Author(s):  
Oscar Noel Ocho ◽  
Cynthia Archer Gift
Keyword(s):  
Health Care ◽  
Health Services ◽  
Focus Groups ◽  
Trinidad And Tobago ◽  
Health Care Providers ◽  
Service Providers ◽  
Care Providers ◽  
Utilization Of Health Services ◽  
Semistructured Interviews ◽  
And Behavior

Introduction While Caribbean researchers have explored masculinity, socialization, and behavior, the literature has been silent on masculinity and “male sensitive” health services. This study explored masculinity and perceptions of “male sensitive” health services. Method An interpretative, phenomenological, qualitative design that used 14 focus groups and 12 semistructured interviews among men between the ages 18 and 65 years. Results The notion of “male sensitive” services were more of preferences like having more females, timeliness, and privacy of services rather than a specific set of services unique to men. Services were expected to be professional, offered in private spaces, timely, and as an “all in one” service with more male service providers. Discussion Male utilization of health services may be a problem if they are not considered “sensitive” to their needs. This has implications for the reorientation of services, as well as, personnel, including increased involvement of males as health care providers.

scholarly journals Unmet needs and recommendations to improve meningioma care through patient, partner, and health care provider input: a mixed-method study

2019 ◽  
Author(s):  
Amir H Zamanipoor Najafabadi ◽  
Johannes P M van de Mortel ◽  
Daniel J Lobatto ◽  
Dieta R Brandsma ◽  
Wilco C Peul ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Health Care Providers ◽  
Unmet Needs ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Theory Approach ◽  
Care Providers ◽  
Patient Centered ◽  
Patient Reported

Abstract Background It has been suggested that lack of ongoing registration of patient-centered outcomes has resulted in existing care trajectories that have not been optimized for sequelae experienced by meningioma patients. This study aimed to evaluate the structure of current meningioma care and identify issues and potential high-impact improvement initiatives. Methods Using the grounded theory approach, a thematic framework was constructed based on the Dutch Comprehensive Cancer Organisation survey about issues in meningioma care trajectories. This framework was used during 3 semistructured interviews and 2 focus groups with patient-partner dyads (n = 16 participants), and 2 focus groups with health care providers (n = 11 participants) to assess issues in current meningioma care trajectories and possible solutions, including barriers to and facilitators for implementation. Results Identified issues (n = 18 issues) were categorized into 3 themes: availability and provision of information, care and support, and screening for (neurocognitive) rehabilitation. A lack of information about the intervention and possible outcomes or complications, lack of support after treatment focusing on bodily and psychological functions, and reintegration into society were considered most important. Sixteen solutions were suggested, such as appointment of case managers (solution for 11/18 issues, 61%), assessment and treatment by physiatrists (22%), and routine use of patient-reported outcome measures for patient monitoring (17%). Barriers for these solutions were lack of budget, capacity, technology infrastructure, and qualified personnel with knowledge about issues experienced by meningioma patients. Conclusions This study identified issues in current multidisciplinary meningioma care that are considered unmet needs by patients, partners, and health care providers and could guide innovation of care.

scholarly journals Digital Health for Patients With Multiple Myeloma: An Unmet Need

2021 ◽  
pp. 1096-1105
Author(s):  
Sundar Jagannath ◽  
Joseph Mikhael ◽  
Omar Nadeem ◽  
Noopur Raje
Keyword(s):  
Health Care ◽  
Multiple Myeloma ◽  
Health Care Providers ◽  
Randomized Clinical Trials ◽  
Digital Health ◽  
Unmet Need ◽  
Care Providers ◽  
Patient Journey ◽  
Health Technologies ◽  
Patient Reported

Multiple myeloma (MM) is associated with the highest symptom burden and lowest health-related quality of life (HRQoL) among patients with hematologic malignancies. HRQoL in MM is heterogeneous, varying over the course of disease, with the highest burden at diagnosis and relapse. Patients with MM are increasingly being treated with oral maintenance medications at home. As a result, longitudinal monitoring of medication adherence and patient-reported outcomes, including HRQoL, could inform on disease status, therapeutic tolerability, and satisfaction with care. Digital health technologies, including telemedicine, mobile health, and wearable devices, are poised to become an integral part of modern health care, in part due to the surge in telemedicine necessitated by the COVID-19 pandemic. Although the literature has many reports on the use of digital health technologies in other types of cancers, fewer studies report on their application to MM. In the current narrative review, we survey the applications of digital health for MM. Although there is evidence that some are associated with improved health outcomes, challenges exist that must be met to ensure more widespread adoption. These include the need for increased awareness by patients and health care providers, lack of access by the typical older patient with MM, absence of randomized clinical trials, and low integration with current workflows such as electronic health records. Following our summary of technologies that could benefit patients with MM, we end by describing our vision for how they can be integrated into each phase of the patient journey.

scholarly journals Reopening Oral Health Services during the COVID-19 Pandemic through a Knowledge Exchange Coalition

2021 ◽  
pp. 238008442110119
Author(s):  
M. McNally ◽  
L. Rock ◽  
M. Gillis ◽  
S. Bryan ◽  
C. Boyd ◽  
...  
Keyword(s):  
Health Care ◽  
Oral Health ◽  
Health Services ◽  
Return To Work ◽  
Health Care Providers ◽  
Online Survey ◽  
Knowledge Exchange ◽  
Oral Health Care ◽  
Care Providers ◽  
Oral Health Services

Background: The COVID-19 novel coronavirus closed oral health care in Nova Scotia (NS) Canada in March 2020. Preparing for a phased reopening, a knowledge exchange coalition (representing government, academia, hospitals, oral health professions, and regulators) developed return-to-work (RTW) guidelines detailing the augmentation of standard practices to ensure safety for patients, oral health care providers (OHPs), and the community. Using online surveys, this study explored the influence of the RTW guidelines and related education on registered NS OHPs during a phased return to work. Methods: Dissemination of R2W guidelines included website or email communiques and interdisciplinary education webinars that coincided with 2 RTW phases approved by the government. Aligned with each phase, all registered dentists, dental hygienists, and dental assistants were invited to complete an online survey to gauge the influence of the coalition-sponsored education and RTW guidelines, confidence, preparedness, and personal protective equipment use before and after the pandemic. Results: Three coalition-sponsored multidisciplinary webinars hosted 3541 attendees prior to RTW. The response to survey 1 was 41% (881/2156) and to survey 2 was 26% (571/2177) of registrants. Survey 1 (82%) and survey 2 (89%) respondents “agreed/strongly agreed” that R2W guidelines were a primary source for guiding return to practice, and most were confident with education received and had the skills needed to effectively treat patients during the COVID-19 pandemic. Confidence and preparedness improved in survey 2. Gowns/lab coat use for aerosol-generating procedures increased from 26% to 93%, and the use of full face shields rose from 6% to 93% during the pandemic. Conclusions: A multistakeholder coalition was effective in establishing and communicating comprehensive guidelines and web-based education to ensure unified reintegration of oral health services in NS during a pandemic. This multiorganizational cooperation lay the foundation for responses to subsequent waves of COVID-19 and may serve as an example for collaboratively responding to future public health threats in other settings. Knowledge Transfer Statement: The return-to-work strategy that was developed, disseminated, and assessed through this COVID-19 knowledge exchange coalition will benefit oral health practitioners, professional regulators, government policy makers, and researchers in future pandemic planning.

Needs assessment for gender sensitive reproductive health services for adolescents

2020 ◽  
Vol 0 (0) ◽  
Author(s):  
Fatemeh Rahmanian ◽  
Soheila Nazarpour ◽  
Masoumeh Simbar ◽  
Ali Ramezankhani ◽  
Farid Zayeri
Keyword(s):  
Health Care ◽  
Reproductive Health ◽  
Health Services ◽  
Health Care Providers ◽  
Health Care Services ◽  
Care Providers ◽  
Reproductive Health Services ◽  
Care Needs ◽  
Reproductive Health Care ◽  
Care Services

AbstractBackgroundA dimension of reproductive health services that should be gender sensitive is reproductive health services for adolescents.ObjectiveThis study aims to assess needs for gender sensitive reproductive health care services for adolescents.MethodsThis was a descriptive cross-sectional study on 341 of health care providers for adolescents in health centers and hospitals affiliated to Shiraz University of Medical Sciences in Iran in 2016. The subjects of the study were recruited using a convenience sampling method. The tools for data collection were: (1) a demographic information questionnaire and; (2) a valid and reliable questionnaire to Assess the Needs of Gender-Sensitive Adolescents Reproductive Health Care Services (ANQ-GSARHS) including three sections; process, structure and policy making for the services. Data were analyzed using SPSS 21.ResultsThree hundred and forty-one health providers with an average working experience of 8.77 ± 5.39 [mean ± standard deviation (SD)] years participated in the study. The results demonstrated the highest scores for educational needs (92.96% ± 11.49%), supportive policies (92.71% ± 11.70%) and then care needs (92.37% ± 14.34%) of the services.ConclusionsProviding gender sensitive reproductive health care services for adolescents needs to be reformed as regards processes, structure and policies of the services. However, the gender appropriate educational and care needs as well as supportive policies are the priorities for reform of the services.

Abstract 002: Patient Provider Communication and Patient-centered Outcomes Among Patients With Atherosclerotic Cardiovascular Disease in United States: Medical Expenditure Panel Survey 2010-2013

2017 ◽  
Vol 10 (suppl_3) ◽  
Author(s):  
Victor Okunrintemi ◽  
Erica Spatz ◽  
Joseph Salami ◽  
Haider Warraich ◽  
Salim Virani ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Medical Expenditure Panel Survey ◽  
Medical Expenditure ◽  
Atherosclerotic Cardiovascular Disease ◽  
Care Providers ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care ◽  
Nationally Representative

Background: With recent enactment of Accountable Care Act, consumer reported patient-provider communication (PPC) assessed by Consumer Assessment of Health Plans Survey (CAHPS) in ambulatory settings is incorporated as a complementary value metric for patient-centered care of chronic conditions in pay-for-performance programs. In this study, we examine the relationship of PPC with select indicators of patient-centered care in a nationally representative adult US population with established atherosclerotic cardiovascular disease (ASCVD). Methods: The study population consisted of a nationally representative sample of 8223 individuals (age ≥ 18 years) representing 21.6 million with established ASCVD (self-reported or ICD-9 diagnosis) reporting a usual source of care in the 2010-2013 pooled Medical Expenditure Panel Survey (MEPS) cohort. Participants responded to questions from CAHPS that assess satisfaction with PPC (four-point response scale: never, sometimes, usually, always ) :(1) “How often providers show respect for what you had to say” (2) “How often health care providers listened carefully to you” (3) “How often health care providers explained things so you understood” (4) “How often health providers spent enough time with you” We developed a weighted PPC composite score, categorized as 1 ( never / sometimes ), 2 ( usually ), and 3 ( always ). Outcomes of interest were 1) patient reported outcomes (PRO): SF-12 physical/mental health status, 2) quality of care measures: statin and ASA use, 3) health-care resource utilization (HRU): Emergency room visits & hospital stays, 4) total annual and out of pocket healthcare expenditures (HCE). Results: As shown in the table, those with ASCVD reporting ineffective (never/sometimes) vs. effective PCC (always) were over 2-fold more likely to report poor PRO, 34% & 22% less likely to report statin and ASA use respectively, had a significantly greater HRU (OR≥ 2 ER visit: 1.40 [95% CI:1.09-1.80], OR≥ 2 hospitalization: 1.35 [95% CI:1.02-1.77], as well as an estimated $1,294 ($121-2468) higher annual HCE. Conclusion: This study reveals a strong relationship between patient-physician communication among those with established ASCVD with patient-reported outcomes, utilization of evidence based therapies, healthcare resource utilization and expenditures.

Challenges of Providing Health Care in Complex Emergencies: A Systematic Review

2021 ◽  
pp. 1-5
Author(s):  
Hesam Seyedin ◽  
Morteza Rostamian ◽  
Fahimeh Barghi Shirazi ◽  
Haleh Adibi Larijani
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Health Services ◽  
Health Care Providers ◽  
Health Care Delivery ◽  
Qualitative Content Analysis ◽  
Care Delivery ◽  
Information Access ◽  
Care Providers ◽  
Complex Emergencies

Abstract Providing health care in times of complex emergencies (CEs) is one of the most vital needs of people. CEs are situations in which a large part of the population is affected by social unrest, wars, and food shortages. This systematic review study was conducted to identify the challenges of health-care delivery in CEs. We searched terms related to health-care delivery and CEs in PubMed, Web of Sciences, Science Direct, and Google scholar databases, as well as Persian databases SID and Magiran. The searching keywords included: “Health Care, Complex Crises, War, Humanitarian, Refugees, Displaced Persons, Health Services, and Challenges.” Of 409 records, we selected 6 articles based on the Preferred Reporting Items for Systematic Reviews (PRISMA) checklist. Studies were analyzed through qualitative content analysis. The results show that CEs affect health-care delivery in 4 primary areas: the workforce, infrastructure, information access, and organization of health services. These areas can pose potential threats for health-care providers and planners at times of emergencies. Thus, they should be informed about these challenges to strengthen the health-care system.

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