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Open Access Publications from the University of California

Scholarly Works (6 results)

  • Article
On-Line Working Paper Series (2007)

Objective. To describe the proportion, characteristics, and attitudes of pediatricians who want to allocate more time in primary care to children with special health care needs (CSHCN). Methods. Data from a national random sample mail survey of 1000 pediatricians were used to examine attitudes towards allocating more time to CSHCN, and associated preferences towards changes to primary care. Results. Sixty percent (n=502) of eligible subjects participated. Forty-five percent of pediatricians reported that, if they could redesign their practices to maximize efficiency and effectiveness, they would allocate more time to providing care to CSHCN. After multivariate adjustment, respondents who wanted to allocate more time to CSHCN were more likely to want to allocate more time to care coordination with staff (OR 3.6[1.7-7.4, p?0.001]) and non-visit communication with parents (OR 3.0[1.7-5.5], p?0.001), and were more likely to prefer delegation of well-child care services to non-physicians (OR 5.9[2.8-12.5], p?0.001). Inadequate reimbursement was reported as the most important obstacle to implementing such changes in their practices. Conclusions. These findings suggest that a substantial number of pediatricians would ideally allocate more time in primary care to CSHCN. Systems of care that could support such a change should be investigated.

    Cover page: General Pediatricians' Views on Allocating More Time in Primary Care Practice to Children with Special Health Care: Results from a National Survey
    • Article
    On-Line Working Paper Series (2007)

    Objective. To describe the proportion, characteristics, and attitudes of pediatricians who want to allocate more time in primary care to children with special health care needs (CSHCN). Methods. Data from a national random sample mail survey of 1000 pediatricians were used to examine attitudes towards allocating more time to CSHCN, and associated preferences towards changes to primary care. Results. Sixty percent (n=502) of eligible subjects participated. Forty-five percent of pediatricians reported that, if they could redesign their practices to maximize efficiency and effectiveness, they would allocate more time to providing care to CSHCN. After multivariate adjustment, respondents who wanted to allocate more time to CSHCN were more likely to want to allocate more time to care coordination with staff (OR 3.6[1.7-7.4, p≤0.001]) and non-visit communication with parents (OR 3.0[1.7-5.5], p≤0.001), and were more likely to prefer delegation of well-child care services to non-physicians (OR 5.9[2.8-12.5], p≤0.001). Inadequate reimbursement was reported as the most important obstacle to implementing such changes in their practices. Conclusions. These findings suggest that a substantial number of pediatricians would ideally allocate more time in primary care to CSHCN. Systems of care that could support such a change should be investigated.

      Cover page: General Pediatricians' Views on Allocating More Time in Primary Care Practice to Children with Special Health Care: Results from a National Survey
      • Article
      • Peer Reviewed
      UC San Francisco Previously Published Works (2015)
      There are situations in which the requirement to obtain conventional written informed consent can impose significant or even insurmountable barriers to conducting pragmatic clinical research, including some comparative effectiveness studies and cluster-randomized trials. Although certain federal regulations governing research in the United States (45 CFR 46) define circumstances in which any of the required elements may be waived, the same standards apply regardless of whether any single element is to be waived or whether consent is to be waived in its entirety. Using the same threshold for a partial or complete waiver limits the options available to institutional review boards as they seek to optimize a consent process. In this article, we argue that new standards are necessary in order to enable important pragmatic clinical research while at the same time protecting patients' rights and interests.
        Cover page: Use of altered informed consent in pragmatic clinical research
        • Article
        • Peer Reviewed
        UC Davis Previously Published Works (2014)

        Purpose

        Researchers must monitor the safety of research participants, particularly in studies involving children and adolescents. Yet, there is limited guidance for the development and implementation of oversight committees for psychosocial, behavioral intervention, and observational studies.

        Methods

        We implemented a model for an Event Monitoring Committee (EMC) in three related studies recruiting 6- to 19-year-old girls from families with and without breast cancer.

        Results

        The EMC model can be valuable for investigators and local institutional review boards when additional oversight is desired. Recommendations are provided and intended to be broadly applicable to a wide range of research activities designed to improve the health of children, adolescents, and families. EMC goals, membership, and procedures for monitoring and assessing risks and benefits should be defined but should also be flexible and tailored to the study design and population. The EMC model also provides an independent comprehensive, study-wide oversight mechanism for multicenter psychosocial, behavioral intervention, and observational studies.

        Conclusions

        An EMC provides an alternative oversight approach where additional independent assessment and oversight of study-related risks are desired, particularly in the setting of vulnerable populations, children and adolescents, or where risks nontraditional to the medical field (i.e., social, emotional, or cultural) are possible.
          Cover page: Human Subjects Protection: An Event Monitoring Committee for Research Studies of Girls From Breast Cancer Families
          • Article
          • Peer Reviewed
          UC Davis Previously Published Works (2014)

          Purpose

          Researchers must monitor the safety of research participants, particularly in studies involving children and adolescents. Yet, there is limited guidance for the development and implementation of oversight committees for psychosocial, behavioral intervention, and observational studies.

          Methods

          We implemented a model for an Event Monitoring Committee (EMC) in three related studies recruiting 6- to 19-year-old girls from families with and without breast cancer.

          Results

          The EMC model can be valuable for investigators and local institutional review boards when additional oversight is desired. Recommendations are provided and intended to be broadly applicable to a wide range of research activities designed to improve the health of children, adolescents, and families. EMC goals, membership, and procedures for monitoring and assessing risks and benefits should be defined but should also be flexible and tailored to the study design and population. The EMC model also provides an independent comprehensive, study-wide oversight mechanism for multicenter psychosocial, behavioral intervention, and observational studies.

          Conclusions

          An EMC provides an alternative oversight approach where additional independent assessment and oversight of study-related risks are desired, particularly in the setting of vulnerable populations, children and adolescents, or where risks nontraditional to the medical field (i.e., social, emotional, or cultural) are possible.
            • Article
            • Peer Reviewed
            UC San Francisco Previously Published Works (2017)
            The rapid development of genomic sequencing technologies has decreased the cost of genetic analysis to the extent that it seems plausible that genome-scale sequencing could have widespread availability in pediatric care. Genomic sequencing provides a powerful diagnostic modality for patients who manifest symptoms of monogenic disease and an opportunity to detect health conditions before their development. However, many technical, clinical, ethical, and societal challenges should be addressed before such technology is widely deployed in pediatric practice. This article provides an overview of the Newborn Sequencing in Genomic Medicine and Public Health Consortium, which is investigating the application of genome-scale sequencing in newborns for both diagnosis and screening.
              Cover page: Newborn Sequencing in Genomic Medicine and Public Health
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