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Han L.C.,Biomedical Ethics Research Unit | Olson J.E.,Mayo Medical School | Koenig B.A.,University of California at San Francisco | Ziegenfuss J.Y.,HealthPartners Institute for Education and Research
Public Health Genomics | Year: 2013

Background: Biobanks are an important resource for genetic and epidemiologic research, but bias may be introduced if those who accept the recruitment invitation differ systematically from those who do not in terms of attributes important to health-related investigations. To understand potential bias in a clinic-based biobank of biological samples, including genetic data linked to electronic health record information, we compared patient characteristics and self-reported information among participants, nonresponders and refusers. We also compared reasons for nonparticipation between refusers and nonresponders to elucidate potential pathways to reduce nonparticipation and any uncovered bias. Methods: We mailed recruitment packets to 1,600 adult patients with upcoming appointments at Mayo Clinic (Rochester, Minn., USA) and recorded their participation status. Administrative data were used to compare characteristics across groups. We used phone interviews with 26 nonresponders and 26 refusers to collect self-reported information, including reasons for nonparticipation. Participants were asked to complete a mailed questionnaire. Results: We achieved 26.2% participation (n = 419) with 12.1% refusing (n = 193) and 61.8% nonresponse (n = 988). In multivariate analyses, sex, age, region of residence, and race/ethnicity were significantly associated with participation. The groups differed in information-seeking behaviors and research experience. Refusers more often cited privacy concerns, while nonresponders more often identified time constraints as the reason for nonparticipation. Conclusion: For genomic medicine to advance, large, representative biobanks are required. Significant associations between patient characteristics and nonresponse, as well as systematic differences between refusers and nonresponders, could introduce bias. Oversampling or recruitment changes, including heightened attention to privacy protection and participation burden, may be necessary to increase participation among less-represented groups. Copyright © 2013 S. Karger AG, Basel. Source


Sabbatini A.K.,University of Michigan | Tilburt J.C.,Mayo Medical School | Tilburt J.C.,Biomedical Ethics Research Unit | Tilburt J.C.,Center for the Science of Health Care Delivery | And 6 more authors.
Journal of General Internal Medicine | Year: 2014

BACKGROUND: Physicians have dual responsibilities to make medical decisions that serve their patients' best interests but also utilize health care resources wisely. Their ability to practice cost-consciously is particularly challenged when faced with patient expectations or requests for medical services that may be unnecessary. OBJECTIVE: To understand how physicians consider health care resources and the strategies they use to exercise cost-consciousness in response to patient expectations and requests for medical care. DESIGN: Exploratory, qualitative focus groups of practicing physicians were conducted. Participants were encouraged to discuss their perceptions of resource constraints, and experiences with redundant, unnecessary and marginally beneficial services, and were asked about patient requests or expectations for particular services. PARTICIPANTS: Sixty-two physicians representing a variety of specialties and practice types participated in nine focus groups in Michigan, Ohio, and Minnesota in 2012 MEASUREMENTS: Iterative thematic content analysis of focus group transcripts PRINCIPAL FINDINGS: Physicians reported making trade-offs between a variety of financial and nonfinancial resources, considering not only the relative cost of medical decisions and alternative services, but the time and convenience of patients, their own time constraints, as well as the logistics of maintaining a successful practice. They described strategies and techniques to educate patients, build trust, or substitute less costly alternatives when appropriate, often adapting their management to the individual patient and clinical environment. CONCLUSIONS: Physicians often make nuanced trade-offs in clinical practice aimed at efficient resource use within a complex flow of clinical work and patient expectations. Understanding the challenges faced by physicians and the strategies they use to exercise cost-consciousness provides insight into policy measures that will address physician's roles in health care resource use. © Society of General Internal Medicine 2014. Source


Thorsteinsdottir B.,Mayo Medical School | Swetz K.M.,Mayo Medical School | Tilburt J.C.,Mayo Medical School | Tilburt J.C.,Biomedical Ethics Research Unit | Tilburt J.C.,Knowledge Evaluation Research Unit
Journal of General Internal Medicine | Year: 2013

The current practice of hemodialysis for the frail elderly frequently ignores core bioethical principles. Lack of transparency and shared decision making coupled with financial incentives to treat have resulted in problems of overtreatment near the end of life. Imminent changes in reimbursement for hemodialysis will reverse the financial incentives to favor not treating high-risk patients. In this article, we describe what is empirically known about the approach to hemodialysis today, and how it violates four core ethical principles. We then discuss how the new financial system turns physician and organizational incentives upside down in ways that may exacerbate the ethical dilemmas, but in the opposite direction. © 2013 Society of General Internal Medicine. Source


Ridgeway J.L.,Mayo Medical School | Han L.C.,Biomedical Ethics Research Unit | Olson J.E.,Mayo Medical School | Lackore K.A.,Mayo Medical School | And 3 more authors.
Public Health Genomics | Year: 2013

Background: Biobanks are an important resource for genetic and epidemiologic research, but bias may be introduced if those who accept the recruitment invitation differ systematically from those who do not in terms of attributes important to health-related investigations. To understand potential bias in a clinic-based biobank of biological samples, including genetic data linked to electronic health record information, we compared patient characteristics and self-reported information among participants, nonresponders and refusers. We also compared reasons for nonparticipation between refusers and nonresponders to elucidate potential pathways to reduce nonparticipation and any uncovered bias. Methods: We mailed recruitment packets to 1,600 adult patients with upcoming appointments at Mayo Clinic (Rochester, Minn., USA) and recorded their participation status. Administrative data were used to compare characteristics across groups. We used phone interviews with 26 nonresponders and 26 refusers to collect self-reported information, including reasons for nonparticipation. Participants were asked to complete a mailed questionnaire. Results: We achieved 26.2% participation (n = 419) with 12.1% refusing (n = 193) and 61.8% nonresponse (n = 988). In multivariate analyses, sex, age, region of residence, and race/ethnicity were significantly associated with participation. The groups differed in information-seeking behaviors and research experience. Refusers more often cited privacy concerns, while nonresponders more often identified time constraints as the reason for nonparticipation. Conclusion: For genomic medicine to advance, large, representative biobanks are required. Significant associations between patient characteristics and nonresponse, as well as systematic differences between refusers and nonresponders, could introduce bias. Oversampling or recruitment changes, including heightened attention to privacy protection and participation burden, may be necessary to increase participation among less-represented groups. Copyright © 2013 S. Karger AG, Basel. Source


Comfere N.I.,Mayo Medical School | Peters M.S.,Mayo Medical School | Jenkins S.,Mayo Medical School | Lackore K.,Mayo Medical School | And 2 more authors.
Journal of Cutaneous Pathology | Year: 2015

Background Communication failures between clinicians and dermatopathologists are prevalent. Our primary objective was to characterize the concerns and challenges of dermatopathologists posed by incomplete or inaccurate clinical information in the skin biopsy requisition form. Methods An explanatory sequential, mixed-methods study design comprised of a survey sent to 1103 members of the American Society of Dermatopathology (ASDP), followed by two focus group sessions. Results A total of 54% (598/1103) of dermatopathologists completed the questionnaire. Most dermatopathologists (80%; 436/548) viewed their roles to be providers of histopathological diagnosis and a report that is clinically meaningful. Paper or electronic requisition forms were the most common communication method (85%; 458/541) and were associated with the highest rates of dissatisfaction in 36% (193/537) of respondents. Inadequacy of specimens emerged as an important factor influencing judgment of the quality of provided clinical information. 44.7% (261/584) of dermatopathologists spent 30 minutes or more on average every day searching for relevant clinical information to assist with their histopathologic interpretation. Conclusion ASDP dermatopathologists expressed significant dissatisfaction with the quality of clinical information in the requisition form and the time spent gathering information necessary for accurate, timely and clinically meaningful diagnosis. These findings have implications for the quality, safety and efficiency of dermatologic care. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd. Source

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