Enabling Intergenerational Research 10.26.09

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Leonard Davis Institute of Health Economics

Author: Mark Weiner

Health & Medicine

Enabling Intergenerational Research: Merging Information Across an Adult and Pediatric Health System 1 Mark G. Weiner, MD, 1 Alice Livshits, 1 Brenton Moore, 1,2 Peter White, PhD, 1,2 Robert Grundmeier, MD 1 University of Pennsylvania School of Medicine, Philadelphia, PA, 2 Children’s Hospital of Philadelphia, Philadelphia, PA ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Child MRN:12345 PseudoID : 100001 Child Name: Cindy Brady DOB: 2/3/2002 PseudoID : 500001 Parent Name: Carol Brady Address: 4222 Clinton Way MRN :98765 PseudoID : 900001 Patient Name: Carol Brady Address: 4222 Clinton Way DOB 6/7/61 Child MRN:45454 PseudoID : 100002 Child Name: Marsha Brady DOB: 6/5/1996 PseudoID : 500001 Parent Name: Carol Brady Address: 4222 Clinton Way CHOP data italicized information is provided to UPHS for matching purposes only and then destroyed. The pseudo id will be retained if a match is found MRN :77788 PseudoID : 900002 Patient Name: Jeannie Nelson Address: 1020 Palm Drive DOB 4/2/69 Child MRN:99887 PseudoID : 100003 Child Name: Emily Brown DOB: 2/3/2002 PseudoID : 500002 Parent Name: Lisa Brown Address: 99 Springfield Ave Child MRN:22334 PseudoID : 100004 Child Name: Tabitha Stevens DOB: 2/3/2002 PseudoID : 500003 Parent Name: Samantha Stevens Address: 1164 Morning Glory Circle MRN :22211 PseudoID : 900003 Patient Name: Samantha Stevens Address: 1164 Morning Glory Circle DOB 4/2/69 UPHS data * The blank cell indicates that the parent of this child is not a patient at UPHS After the match: CHOP retained data UPHS retained data **The blank cells indicates that UPHS patient does not have a child at CHOP ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],Background A possible solution Limitations Demonstration of a hypothetical match A case example Secondary benefits Implications

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Take a look at the below link and then answer the below questions from each of their points of view: Link: https://www.ted.com/talks/john_wilbanks_let_s_pool_our_medical_data/transcript?language=en When you're getting medical treatment, or taking part in medical testing, privacy is important; strict laws limit what researchers can see and know about you. But what if your medical data could be used — anonymously — by anyone seeking to test a hypothesis? John Wilbanks wonders if the desire to protect our privacy is slowing research, and if opening up medical data could lead to a wave of health care innovation. For this blog and tying all the topics covered in the class about the epistemology of knowledge, what is your opinion on this matter? Should we share or should we not share? To be or not to Be? I want you to answer this from different points of view: The Patient: The Mother/Father/Son/Daughter/Husband/Wife/Partner/Friend who is trying to help: The Doctor: The Hospital Administrator: The Researcher: The Companies/Big Pharma: The Government: The Government Watchdogs making sure rules are enforced: The Philanthropists: He slammed the papers down on the table. "Doctor, I won't do it! I just saw on the news that the prostate blood test is useless at my age. It's milking the system." His face showed determination and defiance as his wife looked on in the corner. No amount of entreating could get him to budge on the subject. Forget the 10 years of my life I had sacrificed in the pursuit of medical knowledge, he had crowdsourced on Facebook information about the prostate specific antigen test; the difference is subtle, but I had gone to medical school and he had gone to Google. Posting information on their health and all their test results is a routine event for Friday Facebook users. Proclaiming quackery, he left my office determined never to return. Patients want that aggregation of data. Appealing to their practical nature, the more data, the faster we get to a solution, and if it contributes to research and a better future, it can only be the right decision. Family and friends would likely agree, maintaining that in the best interest of the patient, posting data, even without the benefit of anonymity, is acceptable. As MIPS / MACRA move towards population management, more integrated metrics would be of great interest to the hospital administrator as well and allows for an understanding of which markets are likely to produce the best reimbursements by virtue of their higher baseline of health; not surprisingly, we know higher income demographics produce the most compliant patients with the best medical outcomes, which is why most hospitals now are closing shop in poor neighborhoods, despite their need, and opening up in upscale areas with not only an assured revenue stream of insured clients, but better access to medications for diabetes control, better access to nutrition which means faster and improved healing post-surgery, and lower l ...

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13 Assessing Current Approaches to Childhood Immunizations Department of Psychology, Grand Canyon University PSY-550: Research Methods Dr. Shari Schwartz May 19, 2021 Introduction Immunization is the process in which an individual is protected against disease, and it is done via vaccination. On the other hand, vaccination is the action of a vaccine being introduced into the body to produce immunity to a particular disease. A vaccine is a product that arouses the immune system of an individual, thus the production of immunity to a particular disease. The immunity thus protects the individual from that disease. Immunity is the protection from a disease that is infectious. Child immunization is the primary public health approach in the reduction of child mortality and morbidity. Assessment of the current approaches that are linked to the immunization of a child is essential. Globally, primary immunization is estimated to prevent approximately 2.5 million childhood deaths annually from tetanus, diphtheria, measles, and pertussis (Dube et al., 2013). Immunization succession is always accompanied by rejection of public health practices, and reasons for these have never been straightforward. Some of the motivations are religious, scientific, or even political. To reduce the incidence and prevalence of vaccine-preventable diseases, vaccination programs depend on a high uptake level. Vaccination offers protection for vaccinated individuals. When there are high vaccination coverage rates, the indirect protection rate is stimulated for the overall community (Dube et al., 2013).Literature Review Despite this massive use, immunization coverage in countries still developing has been reported to be still low. If mothers were educated on the importance of these vaccine services to their children, all the children would receive immunization as per the Expanded Program on the Immunization schedule, hence preventing mortality and morbidity. According to Thapar et al., in 2014, approximately an 18.7million children could not get the third dose of the Diphtheria-Pertussis-Tetanus (DPT3) vaccine. The total percentage of children who are one year and below and have to receive their dosses of DPT3 vaccine is seen as a proxy indicator regarding full immunization. The DPT3 estimates assess the health system performance and measure the immunization program effectiveness regarding service delivery. These strategies are thus used in the implementation of strategies for the elimination and eradication of diseases. According to Thapar et al., the global coverage for DPT1 and DPT3 was 90% and 86%, respectively, while that of measles first dose at 86%. The above estimates thus do not replicate the seen differences in vaccine coverage. The coverage of DPT1 and DPT3 varied from 84% and 76% in Africa and 97% and 94% in the European countries. In India, the routine has been lower than in the rest of the countries. Following the 2013 outbreak in Israel, many paren ...

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Journal of Law and the Biosciences, 1–36 doi:10.1093/jlb/lsz007 Advance Access Publication 14 May 2019 Original Article The law of genetic privacy: applications, implications, and limitations Ellen Wright Clayton1, Barbara J. Evans2, James W. Hazel3 and Mark A. Rothstein4,∗ 1. Craig-Weaver Professor of Pediatrics, Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN 37203, USA 2. Mary Ann and Lawrence E. Faust Professor of Law; Professor of Electrical and Computer Engineering; Director, Center for Biotechnology & Law, University of Houston, Houston, TX 77004, USA 3. Postdoctoral Fellow, Center for Genetic Privacy and Identity in Community Settings, Vanderbilt University Medical Center, Nashville, TN 37203, USA 4. Herbert F. Boehl Chair of Law and Medicine, Director, Institute for Bioethics, Health Policy & Law, University of Louisville School of Medicine, Louisville, KY 40202, USA ∗Corresponding author. E-mail: [email protected] ABSTRACT Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramaticincreaseintheamountofgeneticinformationgenerated,analysed, shared, and stored by diverse individuals and entities. Given the diversity of actors and their interests, coupled with the wide variety of ways genetic data are held, it has been difficult to develop broadly applicable legal principles for genetic privacy. This article examines the current landscape of genetic privacy to identify the roles that the law does or should play, with a focus on federal statutes and regulations, including the Health Insurance Portabil- ity and Accountability Act (HIPAA) and the Genetic Information Nondis- crimination Act (GINA). After considering the many contexts in which is- sues of genetic privacy arise, the article concludes that few, if any, applicable legal doctrines or enactments provide adequate protection or meaningful control to individuals over disclosures that may affect them. The article de- scribes why it may be time to shift attention from attempting to control access to genetic information to considering the more challenging question of howthesedatacanbeusedandunderwhatconditions,explicitlyaddressing trade-offs between individual and social goods in numerous applications. K E Y W O R D S: DNA, genetics, genomics, GINA, HIPAA, privacy C© TheAuthor(s)2019.PublishedbyOxfordUniversityPressonbehalfofDukeUniversitySchoolofLaw,Harvard Law School, Oxford University Press, and Stanford Law School. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited D ow nloaded from https://academ ic.oup.com /jlb/article-abstract/6/1/1/5489401 by 81695661, O U P on 29 O ctober 2019 2 � The la ...

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To Prepare: · Review the Congress website provided in the Resources and identify one recent (within the past 5 years) proposed health policy. · Review the health policy you identified and reflect on the background and development of this health policy. Post a description of the health policy you selected and a brief background for the problem or issue being addressed. Explain whether you believe there is an evidence base to support the proposed policy and explain why. Be specific and provide examples. APA format and 3 references Then respond to a peer with 2 references Peer 1 The healthcare policy I chose is S. 3098, S.3098 -is the Preventive Care Awareness Act of 2021. S. 3098 will provide national public health information and focus on people in a lower income bracket who have forgone services during the COVID-19 pandemic. This bill would also create a task force to promote preventative care and development programs in rural and underserved populations. Its primary focus is teaching low-income Americans the benefits of preventive healthcare. This bill is in committee and has bipartisan support (Bell et al., 2017). Reading this proposed bill, I asked myself whether it is lower-income Americans who have forgone preventative treatment during COVID or Americans in general. Preventive screenings have long been advocated as one of the most valuable ways to facilitate early diagnosis and treatment of disease. Cancer screenings have helped lower the US cervical cancer death rate by 50% in the last three decades (2022). According to the American Medical Association, more than 40% of Americans surveyed stopped preventative medical care as covid-19 began (Timothy M. Smith, Senior News Writer, 2020). This number included Americans of all economic levels. I believe no proof was found that only lower-income Americans skipped screenings during the height of the COVID-19 pandemic. According to the Joint Commission, patients with lower health literacy did not see the importance of preventative care during COVID-19 (The Joint Commission, 2022). I believe there is evidence-based support for increasing education for all Americans regarding the importance of preventive health screenings, And indeed more teaching to Americans with a lower understanding of their health. This bill was given only a 3% chance of passing into law. I believe that is partly because it only attempts to reach lower-income populations and not all Americans. 50 words minimum each response R1 I had a hard time with this question. I'd like to believe that all, if not most, health care providers have very high empathy, which would cause them to be sensitive toward patients. However, many different people with different personalities become health providers, and laws and regulations provide boundaries for most people. I believe if left alone, healthcare professionals and other professionals would choose what is most convenient for them and not what is best for the patie ...

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Implementation of Literature Research and Design Sampling to Vaccines Stephanie Dennison Chamberlain University NR 505: Advanced Research Methods December 2018 Running head: VACCINATIONS Running head: VACCINATIONS Implementation of Literature Research and Design Sampling to Vaccines In this section of the paper, the author will continue to delve into the evidence-based proposal project. The author will discuss ten single study research articles related to the topic of vaccines. The author will then identify the quantitative approach and discuss the selected design further. The author will then discuss the target population and how the research will be gathered. The PDSA Change Model will be described in great detail along with how it is applicable to the research. Research Literature Support In this section, the author will disseminate research studies consistent with the childhood vaccination topic. For healthy children 2 months and older (P), how does parental education about vaccines (I) compared to no supplemental education about vaccines (C) increase the number of vaccinated children (O) in a six-week time period (T)? We will explore this PICOT question and find support from previous studies. Jin et al. (2018)published a study that aimed to review the immunization status of cochlear implant recipients, assess if adding a vaccine specialist made a change in vaccine compliance, and elucidate any barriers to vaccine compliance. This study implemented the quantitative approach. Chart review and a telephone survey were used to obtain vaccination status and collect data. The results were that ninety-eight percent of children were vaccinated before surgery as opposed to sixty-seven percent prior to the vaccine specialist consultation. A strength of this study was the inclusion of one hundred and sixteen children. One limitation of this study was the fact that data was collected via a telephone survey. The parents could have been dishonest about whether their child was vaccinated or not. Kaufman et al. (2017) conducted a study that aimed to define different ways to communicate interventions for routine vaccinations and integrate them into a hierarchy of vaccination communication. The quantitative approach was used. Through a targeted literature search, primary fieldwork observation, and consultations with stakeholders data was collected including inclusion and exclusion criteria. The results of the study were the creation of a hierarchy that is categorized by purpose and outlines communication interventions to address gaps in vaccination education. A strength of the study was that data was collected globally during the literature search. The interventions suggested have not been reviewed for accuracy, therefore, the hierarchy could show gaps in evidence. Weidemann et al. (2017) set out to create a mathematical transmission model to examine differences in childhood vaccination efficacy. Transmission modeling was ...

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