P003 INFLAMMATORY BOWEL DISEASE PATIENTS’ PERSPECTIVES OF CLINICAL TRIALS

2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S53-S53
Author(s):  
David Rubin ◽  
Laurent Peyrin-Biroulet ◽  
Walter Reinisch ◽  
Swati Tole ◽  
Laura Sullivan ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Health Care Providers ◽  
Online Survey ◽  
The United States ◽  
Trial Participation ◽  
Pharmaceutical Manufacturer ◽  
Care Providers ◽  
Inflammatory Bowel

Abstract Background Despite recent progress in treatment for inflammatory bowel diseases (IBD), there is a need for therapies with long-term efficacy and improved safety. Clinical trials in IBD face challenges with patient recruitment because of study designs, competitive or overlapping trials, and a limited number of eligible patients. We sought to better understand patients’ motivations, awareness of, and experience with IBD clinical trials. Methods We conducted an international survey of adult patients with IBD consisting of 2 components. The quantitative component, a 15-minute online survey, was completed by all patients. A qualitative component, a 30-minute telephone interview, was completed by a subset of patients from the United States (US). All percentages indicate results from the online survey. Results 226 patients (mean age, 41.9 y) completed the online survey. Survey respondents included patients with ulcerative colitis (52%) and Crohn’s disease (48%) from the US (n=100, 21 of whom underwent a phone interview), Brazil (n=26), Canada (n=25), France (n=25), Germany (n=25), and Spain (n=25). Ninety-six percent of respondents reported at least a basic understanding of clinical trials, and 34 (15%) were current or past clinical trial participants. Patients reported learning about trials through 1 or more sources (could select as many as applied): health care providers (42%), pharmaceutical manufacturer websites (31%), social media (30%), online support groups (28%), and foundations (18%-23%). In the survey, patients rated conversations with health care providers most helpful, but patients who were interviewed revealed that most physicians often do not initiate conversations about clinical trials, and patients typically do not ask. Primary motivators for trial participation (rated from “does not encourage me at all” to “encourages me very much”) included altruistic goals of advancing medicine (67%), potentially mitigating risks of uncontrolled IBD such as colon cancer (59%), and access to treatment options that could improve quality of life (59%) or would otherwise be unaffordable (52%). Major barriers to participation (rated from “does not discourage me at all” to “discourages me very much”) included invasive screening and monitoring (35%), concern over receiving placebo (35%), or suboptimal treatment (33%), and concerns about posttrial access to study medication (27%). The majority (68%) reported that being in a clinical trial means being a “guinea pig” for an experimental treatment. Conclusion Opportunities to improve patients’ clinical trial experience in IBD include better communication with health care providers and improved patient education about clinical trial design and ethics. Ultimately, a better understanding of the patient perspective will be important for more informed patients and potentially higher recruitment and enrollment.

scholarly journals Coping With Tinnitus During the COVID-19 Pandemic

2021 ◽  
pp. 1-9
Author(s):  
Eldré W. Beukes ◽  
Joy Onozuka ◽  
Torryn P. Brazell ◽  
Vinaya Manchaiah
Keyword(s):  
Health Care ◽  
Hearing Loss ◽  
Health Care Providers ◽  
Health Care Services ◽  
Online Survey ◽  
The United States ◽  
Free Text ◽  
Care Providers ◽  
Care Services ◽  
Tinnitus Distress

Purpose The COVID-19 pandemic disrupted normal operations of health care services, broad sectors of the economy, and the ability to socialize freely. For those with tinnitus, such changes can be factors in exacerbating tinnitus. The purpose of this study was to determine tinnitus help-seeking behavior, which resources individuals utilized to cope during the pandemic, and what additional support is desired. Method An exploratory cross-sectional study design including 1,522 adults with tinnitus living in North America (Canada and the United States) was used. Data were collected through an online survey distributed by the American Tinnitus Association via e-mail. Free text from open-ended questions was analyzed using the automated content analysis. The responses to the structured questionnaire were analyzed using descriptive and nonparametric statistics. Results Significantly less tinnitus support was sought during the pandemic, and very few respondents utilized tinnitus support networks during the pandemic at the time the survey was conducted. Nonetheless, seeking support during the pandemic was significantly associated with significantly less tinnitus distress. The most frequently utilized resources for coping during the pandemic were contacting family and friends, spending time outdoors or in nature, relaxation, and exercise. Such tools for coping were associated with significantly less tinnitus distress. The support requested and advice provided by participants to health care services had overlap. The main support needs related to managing tinnitus included addressing hearing loss, providing peer support, finding cures, and accessing trained and understanding health care providers to help. The advice for professionals related to tinnitus management included the need for cures, personalized support, addressing hearing loss, targeting the tinnitus percept, and providing more information about the condition. Conclusions These findings provide suggestions on how to better support those with tinnitus at a time when health care is undergoing rapid changes. Findings can be used by stakeholders, clinical practitioners, and tinnitus support services to devise ways to work more effectively together to improve access to patient-driven, suitable, accessible, and evidence-based support. Supplemental Material https://doi.org/10.23641/asha.14558514

ENACCT's pilot education program (PEP): A model to enhance understanding of cancer clinical trials for community providers and community leaders

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. e17514-e17514
Author(s):  
M. Michaels ◽  
N. Blakeney ◽  
L. Schapira ◽  
A. Britton ◽  
L. Swords ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Health Care Providers ◽  
Education Program ◽  
Cancer Clinical Trials ◽  
Care Providers ◽  
Community Members ◽  
Trial Staff ◽  
Pilot Education

e17514 Background: While nearly 20% of adult cancer patients are eligible for cancer clinical trials, less than 3% of cancer patients participate. Rates of participation are lower among communities of color and the medically underserved. Enhanced community engagement and provider training about cancer clinical trials can potentially result in greater awareness, access, and ultimately, patient accrual. Methods: A three-year Pilot Education Program was developed to explore the impact and feasibility of a community-driven outreach and education intervention focusing on community members, community health care providers, and cancer researchers in three medically underserved communities. Using a train-the-trainer model, PEP sought to raise clinical trial awareness among peers and encourage public inquiries about clinical trials. Workshops for clinical trials staff addressed recruitment and retention practices. Additionally, community sites worked to reduce local policy barriers to clinical trials participation.PEP used web-based surveys, interviews, focus groups and field observation to evaluate impact. Results: Seventy-five trainers were recruited. PEP reached 882 community members (63% minority), 374 health care providers (16% minority) and 61 cancer clinical trial staff. Approximately 5,800 individuals were exposed to educational activities through extended community outreach activities and dissemination of educational materials. Among those completing evaluation surveys, 66% of community leader trainees said they spoke to others about cancer clinical trials. Seventy-two percent of health care providers agreed their role is to inform patients about the possibility of receiving treatment through a clinical trial. Among cancer clinical trial staff, 80% indicated intention to work with community groups on cancer clinical trials education. Seventy-seven unique patient profiles were created with a national cancer clinical trials matching service also associated with PEP. Conclusions: Results from ENACCT's Pilot Education Program suggest promise in improving knowledge among community leaders and health care providers, and fostering greater peer-to-peer education about cancer clinical trials. [Table: see text]

The Special Perils of Being Old and Sick in Prison

2020 ◽  
Vol 32 (5) ◽  
pp. 276-284
Author(s):  
William J. Jefferson
Keyword(s):  
United States ◽  
Health Care ◽  
Medical Care ◽  
Health Care Providers ◽  
The United States ◽  
United States Constitution ◽  
Care Providers ◽  
Medical Practitioners ◽  
Medical Needs ◽  
Access To Medical Care

The United States Supreme Court declared in 1976 that deliberate indifference to the serious medical needs of prisoners constitutes the unnecessary and wanton infliction of pain…proscribed by the Eighth Amendment. It matters not whether the indifference is manifested by prison doctors in their response to the prisoner’s needs or by prison guards intentionally denying or delaying access to medical care or intentionally interfering with treatment once prescribed—adequate prisoner medical care is required by the United States Constitution. My incarceration for four years at the Oakdale Satellite Prison Camp, a chronic health care level camp, gives me the perspective to challenge the generally promoted claim of the Bureau of Federal Prisons that it provides decent medical care by competent and caring medical practitioners to chronically unhealthy elderly prisoners. The same observation, to a slightly lesser extent, could be made with respect to deficiencies in the delivery of health care to prisoners of all ages, as it is all significantly deficient in access, competencies, courtesies and treatments extended by prison health care providers at every level of care, without regard to age. However, the frailer the prisoner, the more dangerous these health care deficiencies are to his health and, therefore, I believe, warrant separate attention. This paper uses first-hand experiences of elderly prisoners to dismantle the tale that prisoner healthcare meets constitutional standards.

Nurse Practitioner Challenges to the Orthodox Structure of Health Care Delivery: Regulation and Restraints on Trade

1985 ◽  
Vol 11 (2) ◽  
pp. 195-225
Author(s):  
Karla Kelly
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Health Care Delivery ◽  
Nurse Practitioners ◽  
Nurse Practitioner ◽  
Allied Health ◽  
Care Delivery ◽  
The United States ◽  
Care Providers ◽  
Allied Health Care

AbstractUntil recently, physicians have been the primary health care providers in the United States. In response to the rising health care costs and public demand of the past decade, allied health care providers have challenged this orthodox structure of health care delivery. Among these allied health care providers are nurse practitioners, who have attempted to expand traditional roles of the registered nurse.This article focuses on the legal issues raised by several major obstacles to the expansion of nurse practitioner services: licensing restrictions, third party reimbursement policies, and denial of access to medical facilities and physician back-up services. The successful judicial challenges to discriminatory practices against other allied health care providers will be explored as a solution to the nurse practitioners’ dilemma.

Patients' Perceptions of Different Information Exchange Mechanisms: An Exploratory Study in the United States

2020 ◽  
Vol 59 (04/05) ◽  
pp. 162-178
Author(s):  
Pouyan Esmaeilzadeh
Keyword(s):  
United States ◽  
Health Care ◽  
Health Information ◽  
Health Care Providers ◽  
Information Exchange ◽  
The United States ◽  
Exchange Mechanism ◽  
Care Providers ◽  
Security Risks ◽  
Direct Exchange

Abstract Background Patients may seek health care services from various providers during treatment. These providers could serve in a network (affiliated) or practice separately (unaffiliated). Thus, using secure and reliable health information exchange (HIE) mechanisms would be critical to transfer sensitive personal health information (PHI) across distances. Studying patients' perceptions and opinions about exchange mechanisms could help health care providers build more complete HIEs' databases and develop robust privacy policies, consent processes, and patient education programs. Objectives Due to the exploratory nature of this study, we aim to shed more light on public perspectives (benefits, concerns, and risks) associated with the four data exchange practices in the health care sector. Methods In this study, we compared public perceptions and expectations regarding four common types of exchange mechanisms used in the United States (i.e., traditional, direct, query-based, patient-mediated exchange mechanisms). Traditional is an exchange through fax, paper mailing, or phone calls, direct is a provider-to-provider exchange, query-based is sharing patient data with a central repository, and patient-mediated is an exchange mechanism in which patients can access data and monitor sharing. Data were collected from 1,624 subjects using an online survey to examine the benefits, risks, and concerns associated with the four exchange mechanisms from patients' perspectives. Results Findings indicate that several concerns and risks such as privacy concerns, security risks, trust issues, and psychological risks are raised. Besides, multiple benefits such as access to complete information, communication improvement, timely and convenient information sharing, cost-saving, and medical error reduction are highlighted by respondents. Through consideration of all risks and benefits associated with the four exchange mechanisms, the direct HIE mechanism was selected by respondents as the most preferred mechanism of information exchange among providers. More than half of the respondents (56.18%) stated that overall they favored direct exchange over the other mechanisms. 42.70% of respondents expected to be more likely to share their PHI with health care providers who implemented and utilized a direct exchange mechanism. 43.26% of respondents believed that they would support health care providers to leverage a direct HIE mechanism for sharing their PHI with other providers. The results exhibit that individuals expect greater benefits and fewer adverse effects from direct HIE among health care providers. Overall, the general public sentiment is more in favor of direct data transfer. Our results highlight that greater public trust in exchange mechanisms is required, and information privacy and security risks must be addressed before the widespread implementation of such mechanisms. Conclusion This exploratory study's findings could be interesting for health care providers and HIE policymakers to analyze how consumers perceive the current exchange mechanisms, what concerns should be addressed, and how the exchange mechanisms could be modified to meet consumers' needs.

scholarly journals Patient Suffering in Chronic Digestive Diseases: Will Primary Care-Specialist Collaboration With Effective Interactive Communication and Integrative Medicine in the Plan of Care Improve Quality of Life?

2020 ◽  
Vol 7 (6) ◽  
pp. 989-993
Author(s):  
Andrew Thomas ◽  
Annie Thomas
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Health Care ◽  
Health Care Providers ◽  
The United States ◽  
Care Providers ◽  
Physician Visits ◽  
Digestive Diseases ◽  
Care Specialist

Acute and chronic digestive diseases are causing increased burden to patients and are increasing the United States health care spending. The purpose of this case report was to present how nonconfirmatory and conflicting diagnoses led to increased burden and suffering for a patient thus affecting quality of life. There were many physician visits and multiple tests performed on the patient. However, the primary care physician and specialists could not reach a confirmatory diagnosis. The treatment plans did not offer relief of symptoms, and the patient continues to experience digestive symptoms, enduring this burden for over 2 years. The central theme of this paper is to inform health care providers the importance of utilizing evidence-based primary care specialist collaboration models for better digestive disease outcomes. Consistent with patient’s experience, the authors propose to pilot/adopt the integrative health care approaches that are proven effective for treating digestive diseases.

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.

Pediatric Collections: Vaping: Effects and Solutions

2020 ◽  
Author(s):  
Keyword(s):  
Public Health ◽  
United States ◽  
Health Care ◽  
Health Care Providers ◽  
Electronic Cigarettes ◽  
The United States ◽  
Care Providers ◽  
Tobacco Products ◽  
Pediatric Health ◽  
Pediatric Health Care

Electronic cigarettes are the tobacco products most commonly used by youths in the United States. The use of e-cigarettes, also known as vaping or JUULing, is a public health epidemic. This collection offers reviews and research to assist pediatric health care providers in identifying and treating adolescent use and exposure to e-cigarettes. https://shop.aap.org/pediatric-collections-vaping-effects-and-solutions-paperback/

Fraud and Abuse: United States ex rel Merena v. SmithKline Beecham Corp.; United States ex rel Spear v. SmithKline Beecham Clinical Lab.; United States ex rel Grossenbacher v. SmithKline Beecham Clinical Lab.

2000 ◽  
Vol 28 (2) ◽  
pp. 191-193 ◽  
Author(s):  
Allyson Behm
Keyword(s):  
United States ◽  
Health Care ◽  
Health Care Providers ◽  
Laboratory Tests ◽  
The United States ◽  
Care Providers ◽  
Individual Analysis ◽  
Court Of Appeals ◽  
The Third ◽  
The Government

The United States Court of Appeals for the Third Circuit held that when quitam relators file a multi-claim complaint under the Fraudulent Claims Act (FCA), their share of the proceeds must be based on an individual analysis of each claim. More importantly, the court held that relators are not entitled to any portion of the settlement of a specific claim if that claim was subject to dismissal under section 3730(e)(4) Relator Merena filed a quitam suit against his employer, SmithKline Beecham (SKB), claiming, among other things, that SKB defrauded the government by billing for laboratory tests that were not performed, paying illegal kickbacks to health care providers, and participating in an “automated chemistry” scheme. Soon thereafter, additional relators filed suit.

scholarly journals Qualitative Research Methodology and its Scope in Health Services Research

2020 ◽  
Vol 3 (2) ◽  
pp. 18-21
Author(s):  
Naiya Patel
Keyword(s):  
Health Care ◽  
Qualitative Research ◽  
Clinical Trials ◽  
Health Services Research ◽  
Health Services ◽  
Health Care Providers ◽  
Research Methodology ◽  
Care Providers ◽  
Services Research ◽  
Qualitative Research Methodology

Health services research is a multidisciplinary field which involves policy makers, health care providers, as well as quality outcomes professionals of the health services provided in an organizational setting to name some. Using qualitative research methodology to get insights of both the provider and patient experience down the pipeline can help strengthen what is lacking. Bridging the gap of translation research by not just surveys 1 might be an appropriate research methodology, however, inclusion of case studies, ethnographies might help stakeholders in the field, to visualize in depth phenomenon occurring in health services research field. Telly medicine, commercial digital health status trackr might be some of the inetrventions to improvise health care services, however, knowing what are the actual needs at individual level might efficiently help in redistribution of resources or policy laws. Recruiting for clinical trials through story telling communication technology2,3, might help in recruitment for novel drug therapies to explore possibilities, however, exploring the barriers to enroll for the clinical trials, or why the drug might work effectively in some cultural population and why not on others, can only be efficiently explored through qualitative research methodologies.

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