Amy Sheon - Academia.edu (original) (raw)
Papers by Amy Sheon
BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person he... more BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person healthcare visits [1 2]. However, older people are less likely to participate in telemedicine, preferring either in-person care or foregoing care altogether [3-6]. With a high prevalence of chronic conditions and vulnerability to COVID-19 morbidity and mortality through exposure to others in health care environments, (1-4), promoting telemedicine use should be a high priority for seniors. Seniors face significant barriers to participation in telemedicine, including lower internet and device access and skills, and visual, auditory, and tactile difficulties with telemedicine. OBJECTIVE Hoping to offer training to increase telemedicine use, we undertook a quality improvement survey to identify barriers to, and facilitators of telemedicine among seniors presenting to an outpatient family medicine teaching clinic which serves predominantly African American, economically disadvantaged adults with chronic illness in Cleveland, Ohio. METHODS Our survey, designated by the IRB as quality improvement, was designed based on a review of the literature, and input from our primary care providers and a digital equity expert (Figure 1). To minimize patient burden, the survey was limited to 10 questions. Because we were interested in technology barriers, data were collected on paper rather than a tablet or computer, with a research assistant available to read the survey questions. Patients presenting with needs that could be accomplished remotely were approached by a research assistant to complete the survey starting February 2021 until we reached the pre-determined sample size (N=30) in June 2021. Patients with known dementia, those who normally resident in a long-term care facility, and those presenting with an acute condition (e.g. fall or COPD exacerbation) were ineligible. Because of the small number of respondents, only univariate and bivariate tabulations were performed, in Excel. RESULTS 83% of respondents said they had devices that could be used for a telemedicine visit and that they went on the internet, but just 23% had had telemedicine visits. Few patients had advanced devices (iPhones, desktops, laptops or tablets); 46% had only a single device that was not IOS based mobile (Table 1). All participants with devices said they used them for “messaging on the internet,” but this was the only function used by 40%. No one used the internet for banking, shopping, and few used internet functions commonly needed for telemedicine (23.3% had email; 30% did video calling) (Table 1). 23.3% of respondents had had a telemedicine appointment. Many reported a loss of connection to their doctor as a concern. Participants who owned a computer or iPhone used their devices for a broader range of tasks, (Table 2 and 3), were aged 65-70 (Table 4), and were more likely to have had a telemedicine visit and to have more favorable views of telemedicine (Table 2). Respondents who had not had a telemedicine appointment endorsed a greater number of telemedicine disadvantages and endorsed less interest in future appointments (Table 2). Respondents who did not own an internet-capable device did not report using any internet functions and none had had a telemedicine appointment (Table 2). CONCLUSIONS This small survey revealed significant gaps in telemedicine readiness among seniors who said they had devices that could be used for telemedicine and that they went online themselves. No patients used key internet functions needed for staying safe during COVID, and few used internet applications that required skills needed for telemedicine. Few patients had devices that are optimal for seniors using telemedicine. Patients with more advanced devices used more internet functions and had more telemedicine experience and more favorable attitudes than others. Our results confirm previous studies [7-9] showing generally lower technological proficiency among older adults and some concerns about participating in telemedicine. However, our study is novel in pointing to subtle dimensions of telemedicine readiness that warrant further study—device capacity and use of internet in ways that build skills needed for telemedicine such as email and video calling. Before training seniors to use telemedicine, it’s important to ensure that they have the devices, basic digital skills and connectivity needed for telemedicine. Larger studies are needed to confirm our results and apply multivariate analysis to understand the relationships among age, device quality, internet skills and telemedicine attitudes. Development of validated scales of telemedicine readiness and telemedicine training to complement in-person care can help health systems offer precision-matched interventions to address barriers, facilitate increased adoption, and generally improve patients’ overall access to primary care and engagement with their primary care provider.
AIDS Research and Human Retroviruses, Oct 1, 1995
A Workshop was held November 8,1994 to discuss actual and theoretical risks for discrimination ag... more A Workshop was held November 8,1994 to discuss actual and theoretical risks for discrimination against volunteers in future HIV preventive vaccine efficacy trials. A small proportion of volunteers in ongoing Phase I/II vaccine trials have had positive HIV antibody tests due to vaccine-induced HIV antibody responses. Some volunteers had difficulty obtaining health and life insurance, employment with the U.S. military, and with foreign travel. Study staff were able to resolve almost all such problems. Gay men enrolled in prospective seroincidence studies experienced a 1.6% chance per year of undergoing required HIV antibody tests. Among subjects enrolled in future vaccine trials, the likelihood of such tests resulting in discrimination will depend on the type of vaccine and antibody tests used. The Americans with Disabilities Act may be used to prevent illegal discrimination against those actually, or erroneously thought to be HIV infected. A study is underway to estimate the frequency with which volunteers in a study of gpl20 preventive vaccines have actually experienced legal and illegal discrimination as a result of trial participation. Data and Safety Monitoring Boards can evaluate such data and should recommend modification of trial procedures or termination of trials if volunteers experience severe social harm due to their participation in trials. Participants in this workshop reviewed concerns about DISCRIMINATION BASED ON RISK discrimination against HIV vaccine trial volunteers and GROUP MEMBERSHIP suggested potential solutions. Volunteers in vaccine trials risk discrimination from being falsely identified as HIV infected Mr. Derek Hodel, Gay Men's Health Crisis, summarized the should the vaccine induce an antibody response reactive on conclusions of an interdisciplinary Working Group on HIV commercial tests. Volunteers also risk discrimination if they are Preventive Vaccines. Trial volunteers who develop antibody represumed, by virtue of their trial participation, to engage in ilsponses to vaccines risk discrimination that is legally permitlicit or socially proscribed high-risk behavior such as injection ted (refusal of employment in the U.S. military, denial of health drug use or homosexual intercourse. Speakers represented the insurance), and that is illegal (dismissal from employment). AIDS Vaccine Evaluation Group (AVEG) experience (Phase Those sponsoring vaccine trials will focus their efforts on re-I/II trials in low and high risk volunteers1), the Vaccine ducing discrimination by differentiating true infection from an-Preparedness Initiative (high-risk gay men and injection drug tibody-induced responses1, and by helping volunteers explain users in prospective seroincidence and behavioral studies2-3), such test results. However, it is important to acknowledge that the Working Group on HIV Preventive Vaccines,4 and the discrimination against truly infected individuals, and against Centers for Disease Control (CDC). those engaging in stigmatized behaviors is rampant. Trial spon
Oxford University Press eBooks, 2021
Over the last several years, there has been rapid growth of digital technologies attempting to tr... more Over the last several years, there has been rapid growth of digital technologies attempting to transform healthcare. Unique features of digital medicine technology lead to both challenges and opportunities for testing and validation. Yet little guidance exists to help a health system decide whether to undertake a pilot test of new technology, move right to full-scale adoption, or start somewhere in between. To navigate this complexity, this chapter proposes an algorithm to help choose the best path toward validation and adoption. Special attention is paid to considering whether the needs of patients with limited digital skills, equipment (e.g., smartphones) and connectivity (e.g., data plans) have been considered in technology development and deployment. The algorithm reflects the collective experience of 20+ health systems and academic institutions that have established the Network of Digital Evidence for Health, NODE.Health, plus insights from existing clinical research taxonomies, syntheses, or frameworks for assessing technology or for reporting clinical trials.
PubMed, Sep 1, 1994
Out of nearly 900 women in a research study of human immunodeficiency virus infection in pregnanc... more Out of nearly 900 women in a research study of human immunodeficiency virus infection in pregnancy, 8 were subsequently found not to be infected. Misdiagnoses could have resulted from (a) laboratory errors or specimen mixups; (b) failure to follow the testing algorithm recommended by the Centers for Disease Control and Prevention to confirm results; (c) women perceiving they were infected by high-risk behavior in the absence of testing, despite the receipt of negative test results, or based on screening results only; or (d) factitious disorder, HIV Munchausen syndrome, or malingering. Because of the potentially devastating impact of an HIV diagnosis and the toxicity of HIV therapies, health care providers should obtain independent confirmation of the diagnosis before initiating treatment or followup for HIV based on patient report or provider referral. Quality test interpretation and counseling must be ensured. Therapeutic interventions may be indicated for persons intentionally and falsely presenting themselves as HIV-infected.
Innovation in Aging, 2018
technology (HIT) shows potential for increasing the value of health care. However, HIT use is low... more technology (HIT) shows potential for increasing the value of health care. However, HIT use is lower among older adults and disadvantaged patients. We evaluated the effectiveness of a program for increasing patient portal use and internet access among underserved patients. We conducted a quasi-experimental study of a community health worker (CHW) and digital literacy program to improve patient portal use by disadvantaged patients seen at one urban primary care clinic. Patients met with a clinicbased CHW who explained patient portal use, gave referrals for a free, health-focused digital literacy training program, and identified connectivity barriers. We evaluated the program using electronic health record data (intervention vs. a control clinic) and daily CHW experience logs. In all, 186 patients met with a CHW. Of these, 2% lacked adequate English proficiency to use the portal, 18% were not interested, 26% already were using the portal and 55% expressed interest and were directed to the training program. Based on data from 6-months pre-and 6 months post-implementation, the CHW program was associated with a threefold increase in the rate of first-time patient portal use and double the rate of portal-based visit scheduling for the intervention vs. control site (p = 0.14). Training barriers included lack of transportation, fear/anxiety of internet, and cost of internet service. Perceived benefits included ready access to lab results and proxy access to family members' health information. These results suggest that a novel clinic-based CHW program and community partnership can promote effective HIT use among disadvantaged populations.
JMIR formative research, Jul 27, 2022
Background: Older adults are a high priority for telemedicine given their elevated COVID-19 risk ... more Background: Older adults are a high priority for telemedicine given their elevated COVID-19 risk and need for frequent provider contact to manage chronic illnesses. It seems that many older adults now use smartphones but few studies have examined their overall readiness for telemedicine. Objective: The aim of this study is to survey older primary care patients about their telemedicine preparedness, including internet usage, internet-capable devices, telemedicine experiences and concerns, and perceived barriers. Results were used to inform a telemedicine preparedness training program. Methods: Community-dwelling older adult patients (aged 65-81 years; N=30) with a chronic health condition that could be managed remotely who were present at a family medicine clinic that primarily serves an urban African American population for a prescheduled in-person appointment were asked to complete a brief survey written for this study. Data were collected February-June 2021 at a large, urban, Midwestern hospital. To minimize patient burden, the survey was limited to 10 questions, focused on the most critical topics. Results: Most participants (21/30, 70%) reported having a device that could be used for telemedicine and using the internet. However, about half had only a single connected device, and messaging and video calling were the most commonly used applications. Few used email and none used online shopping or banking. Only 7 patients had had telemedicine appointments. Telemedicine users were younger than nonusers and used more internet functions than nonusers. Only 2 people reported problems with their telemedicine visits (technology and privacy). Nearly all respondents recognized avoiding travel and COVID-19 exposure as telemedicine benefits. The most common concerns were loss of the doctor-patient connection and inability to be examined. Conclusions: Most older adults reported having devices that could be used for telemedicine, but their internet use patterns did not confirm the adequacy of their devices or skills for telemedicine. Doctor-patient conversations could be helpful in addressing telemedicine concerns but device and skill gaps must be addressed as well.
AIDS research and human retroviruses, 1994
Preparations for large-scale trials to test the efficacy of candidate HIV vaccines can benefit in... more Preparations for large-scale trials to test the efficacy of candidate HIV vaccines can benefit in several crucial ways from a targeted program of behavioral and social research. Randomized field experiments testing alternative procedures for the recruitment and retention of subjects can help identify research procedures that will ensure adequate sample sizes while minimizing sample attrition over time. Similarly, assuring that subjects accurately comprehend the potential risks of participation will require more than simply presenting scientifically accurate information. Ensuring both the adequacy and appropriateness of risk communications as well as the accuracy of subject perception of risks (across the social and cultural milieux in which vaccine trials will be undertaken) is a critical task. Ethnographic and behavioral studies can help to ensure that our obligation to obtain truly informed consent from our research subjects is fully met and documented. Monitoring risk behaviors o...
American Journal of Obstetrics and Gynecology, 1997
AIDS Research and Human Retroviruses, 1995
ABSTRACT A Workshop was held November 8, 1994 to discuss actual and theoretical risks for discrim... more ABSTRACT A Workshop was held November 8, 1994 to discuss actual and theoretical risks for discrimination against volunteers in future HIV preventive vaccine efficacy trials. A small proportion of volunteers in ongoing Phase I/II vaccine trials have had positive HIV antibody tests due to vaccine-induced HIV antibody responses. Some volunteers had difficulty obtaining health and life insurance, employment with the U.S. military, and with foreign travel. Study staff were able to resolve almost all such problems. Gay men enrolled in prospective seroincidence studies experienced a 1.6% chance per year of undergoing required HIV antibody tests. Among subjects enrolled in future vaccine trials, the likelihood of such tests resulting in discrimination will depend on the type of vaccine and antibody tests used. The Americans with Disabilities Act may be used to prevent illegal discrimination against those actually, or erroneously thought to be HIV infected. A study is underway to estimate the frequency with which volunteers in a study of gp120 preventive vaccines have actually experienced legal and illegal discrimination as a result of trial participation. Data and Safety Monitoring Boards can evaluate such data and should recommend modification of trial procedures or termination of trials if volunteers experience severe social harm due to their participation in trials.
BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person he... more BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person healthcare visits [1 2]. However, older people are less likely to participate in telemedicine, preferring either in-person care or foregoing care altogether [3-6]. With a high prevalence of chronic conditions and vulnerability to COVID-19 morbidity and mortality through exposure to others in health care environments, (1-4), promoting telemedicine use should be a high priority for seniors. Seniors face significant barriers to participation in telemedicine, including lower internet and device access and skills, and visual, auditory, and tactile difficulties with telemedicine. OBJECTIVE Hoping to offer training to increase telemedicine use, we undertook a quality improvement survey to identify barriers to, and facilitators of telemedicine among seniors presenting to an outpatient family medicine teaching clinic which serves predominantly African American, economically disadvantaged adults wit...
Over the last several years, there has been rapid growth of digital technologies attempting to tr... more Over the last several years, there has been rapid growth of digital technologies attempting to transform healthcare. Unique features of digital medicine technology lead to both challenges and opportunities for testing and validation. Yet little guidance exists to help a health system decide whether to undertake a pilot test of new technology, move right to full-scale adoption, or start somewhere in between. To navigate this complexity, this chapter proposes an algorithm to help choose the best path toward validation and adoption. Special attention is paid to considering whether the needs of patients with limited digital skills, equipment (e.g., smartphones) and connectivity (e.g., data plans) have been considered in technology development and deployment. The algorithm reflects the collective experience of 20+ health systems and academic institutions that have established the Network of Digital Evidence for Health, NODE.Health, plus insights from existing clinical research taxonomies...
Digital Biomarkers
Background: The Network of Digital Evidence (NODE) was formed to further advance the field of hea... more Background: The Network of Digital Evidence (NODE) was formed to further advance the field of health information technology (HIT) and evidence-based digital medicine at different healthcare institutions nationwide. As the NODE network reviewed the state of the field, it was noted that despite substantial financial and human capital investments, the processes and results of HIT innovation seem chaotic and subpar, especially in comparison to the more wellestablished drug and device industries. During the course of this white paper, we will explore the causes for this observed phenomenon as well as propose possible solutions to improve the state of HIT. Methods: We compared the entire process of discovery, proof of concept, Food and Drug Administration (FDA) review, and postmarket monitoring and distribution/ implementation of HIT innovations to the equivalent processes for drugs and devices. Whereas drug and device innovations are subject to a standardized pipeline of production, HIT innovations are not held to equivalent standards. Conclusions: As a result, HIT lags behind the more mature drug and device industries in producing effective and reliable products. This leads to an inefficient use of already scarce healthcare resources. The authors believe that the HIT industry must adopt many of the mechanisms implemented by the drug and device industries as dictated by their innovation pipelines of discovery, proof of concept, FDA review, and postmarket monitoring and distribution/implementation. We propose an eight-point plan to fundamentally evolve the HIT lifecycle, including reforms for institutions such as neu
Aids Public Policy Journal, Feb 1, 1994
AMA journal of ethics, 2017
This case explores a fictitious hospital's use of co-creation to make a decision about redesi... more This case explores a fictitious hospital's use of co-creation to make a decision about redesign of inpatient units as a first step in incorporating stakeholder input into creation of governing policies. We apply a "procedural fairness" framework to reveal that conditions required for an ethical decision about space redesign were not met by using clinician and patient focus groups to obtain stakeholder input. In this article, we identify epistemic injustices resulting from this process that could undermine confidence in leadership decisions. Suggestions are offered for incorporating stakeholder input going forward that address prior shortcomings. The result should be conditions that are perceived as procedurally fair and decisions that engender confidence in institutional leadership.
BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person he... more BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person healthcare visits [1 2]. However, older people are less likely to participate in telemedicine, preferring either in-person care or foregoing care altogether [3-6]. With a high prevalence of chronic conditions and vulnerability to COVID-19 morbidity and mortality through exposure to others in health care environments, (1-4), promoting telemedicine use should be a high priority for seniors. Seniors face significant barriers to participation in telemedicine, including lower internet and device access and skills, and visual, auditory, and tactile difficulties with telemedicine. OBJECTIVE Hoping to offer training to increase telemedicine use, we undertook a quality improvement survey to identify barriers to, and facilitators of telemedicine among seniors presenting to an outpatient family medicine teaching clinic which serves predominantly African American, economically disadvantaged adults with chronic illness in Cleveland, Ohio. METHODS Our survey, designated by the IRB as quality improvement, was designed based on a review of the literature, and input from our primary care providers and a digital equity expert (Figure 1). To minimize patient burden, the survey was limited to 10 questions. Because we were interested in technology barriers, data were collected on paper rather than a tablet or computer, with a research assistant available to read the survey questions. Patients presenting with needs that could be accomplished remotely were approached by a research assistant to complete the survey starting February 2021 until we reached the pre-determined sample size (N=30) in June 2021. Patients with known dementia, those who normally resident in a long-term care facility, and those presenting with an acute condition (e.g. fall or COPD exacerbation) were ineligible. Because of the small number of respondents, only univariate and bivariate tabulations were performed, in Excel. RESULTS 83% of respondents said they had devices that could be used for a telemedicine visit and that they went on the internet, but just 23% had had telemedicine visits. Few patients had advanced devices (iPhones, desktops, laptops or tablets); 46% had only a single device that was not IOS based mobile (Table 1). All participants with devices said they used them for “messaging on the internet,” but this was the only function used by 40%. No one used the internet for banking, shopping, and few used internet functions commonly needed for telemedicine (23.3% had email; 30% did video calling) (Table 1). 23.3% of respondents had had a telemedicine appointment. Many reported a loss of connection to their doctor as a concern. Participants who owned a computer or iPhone used their devices for a broader range of tasks, (Table 2 and 3), were aged 65-70 (Table 4), and were more likely to have had a telemedicine visit and to have more favorable views of telemedicine (Table 2). Respondents who had not had a telemedicine appointment endorsed a greater number of telemedicine disadvantages and endorsed less interest in future appointments (Table 2). Respondents who did not own an internet-capable device did not report using any internet functions and none had had a telemedicine appointment (Table 2). CONCLUSIONS This small survey revealed significant gaps in telemedicine readiness among seniors who said they had devices that could be used for telemedicine and that they went online themselves. No patients used key internet functions needed for staying safe during COVID, and few used internet applications that required skills needed for telemedicine. Few patients had devices that are optimal for seniors using telemedicine. Patients with more advanced devices used more internet functions and had more telemedicine experience and more favorable attitudes than others. Our results confirm previous studies [7-9] showing generally lower technological proficiency among older adults and some concerns about participating in telemedicine. However, our study is novel in pointing to subtle dimensions of telemedicine readiness that warrant further study—device capacity and use of internet in ways that build skills needed for telemedicine such as email and video calling. Before training seniors to use telemedicine, it’s important to ensure that they have the devices, basic digital skills and connectivity needed for telemedicine. Larger studies are needed to confirm our results and apply multivariate analysis to understand the relationships among age, device quality, internet skills and telemedicine attitudes. Development of validated scales of telemedicine readiness and telemedicine training to complement in-person care can help health systems offer precision-matched interventions to address barriers, facilitate increased adoption, and generally improve patients’ overall access to primary care and engagement with their primary care provider.
AIDS Research and Human Retroviruses, Oct 1, 1995
A Workshop was held November 8,1994 to discuss actual and theoretical risks for discrimination ag... more A Workshop was held November 8,1994 to discuss actual and theoretical risks for discrimination against volunteers in future HIV preventive vaccine efficacy trials. A small proportion of volunteers in ongoing Phase I/II vaccine trials have had positive HIV antibody tests due to vaccine-induced HIV antibody responses. Some volunteers had difficulty obtaining health and life insurance, employment with the U.S. military, and with foreign travel. Study staff were able to resolve almost all such problems. Gay men enrolled in prospective seroincidence studies experienced a 1.6% chance per year of undergoing required HIV antibody tests. Among subjects enrolled in future vaccine trials, the likelihood of such tests resulting in discrimination will depend on the type of vaccine and antibody tests used. The Americans with Disabilities Act may be used to prevent illegal discrimination against those actually, or erroneously thought to be HIV infected. A study is underway to estimate the frequency with which volunteers in a study of gpl20 preventive vaccines have actually experienced legal and illegal discrimination as a result of trial participation. Data and Safety Monitoring Boards can evaluate such data and should recommend modification of trial procedures or termination of trials if volunteers experience severe social harm due to their participation in trials. Participants in this workshop reviewed concerns about DISCRIMINATION BASED ON RISK discrimination against HIV vaccine trial volunteers and GROUP MEMBERSHIP suggested potential solutions. Volunteers in vaccine trials risk discrimination from being falsely identified as HIV infected Mr. Derek Hodel, Gay Men's Health Crisis, summarized the should the vaccine induce an antibody response reactive on conclusions of an interdisciplinary Working Group on HIV commercial tests. Volunteers also risk discrimination if they are Preventive Vaccines. Trial volunteers who develop antibody represumed, by virtue of their trial participation, to engage in ilsponses to vaccines risk discrimination that is legally permitlicit or socially proscribed high-risk behavior such as injection ted (refusal of employment in the U.S. military, denial of health drug use or homosexual intercourse. Speakers represented the insurance), and that is illegal (dismissal from employment). AIDS Vaccine Evaluation Group (AVEG) experience (Phase Those sponsoring vaccine trials will focus their efforts on re-I/II trials in low and high risk volunteers1), the Vaccine ducing discrimination by differentiating true infection from an-Preparedness Initiative (high-risk gay men and injection drug tibody-induced responses1, and by helping volunteers explain users in prospective seroincidence and behavioral studies2-3), such test results. However, it is important to acknowledge that the Working Group on HIV Preventive Vaccines,4 and the discrimination against truly infected individuals, and against Centers for Disease Control (CDC). those engaging in stigmatized behaviors is rampant. Trial spon
Oxford University Press eBooks, 2021
Over the last several years, there has been rapid growth of digital technologies attempting to tr... more Over the last several years, there has been rapid growth of digital technologies attempting to transform healthcare. Unique features of digital medicine technology lead to both challenges and opportunities for testing and validation. Yet little guidance exists to help a health system decide whether to undertake a pilot test of new technology, move right to full-scale adoption, or start somewhere in between. To navigate this complexity, this chapter proposes an algorithm to help choose the best path toward validation and adoption. Special attention is paid to considering whether the needs of patients with limited digital skills, equipment (e.g., smartphones) and connectivity (e.g., data plans) have been considered in technology development and deployment. The algorithm reflects the collective experience of 20+ health systems and academic institutions that have established the Network of Digital Evidence for Health, NODE.Health, plus insights from existing clinical research taxonomies, syntheses, or frameworks for assessing technology or for reporting clinical trials.
PubMed, Sep 1, 1994
Out of nearly 900 women in a research study of human immunodeficiency virus infection in pregnanc... more Out of nearly 900 women in a research study of human immunodeficiency virus infection in pregnancy, 8 were subsequently found not to be infected. Misdiagnoses could have resulted from (a) laboratory errors or specimen mixups; (b) failure to follow the testing algorithm recommended by the Centers for Disease Control and Prevention to confirm results; (c) women perceiving they were infected by high-risk behavior in the absence of testing, despite the receipt of negative test results, or based on screening results only; or (d) factitious disorder, HIV Munchausen syndrome, or malingering. Because of the potentially devastating impact of an HIV diagnosis and the toxicity of HIV therapies, health care providers should obtain independent confirmation of the diagnosis before initiating treatment or followup for HIV based on patient report or provider referral. Quality test interpretation and counseling must be ensured. Therapeutic interventions may be indicated for persons intentionally and falsely presenting themselves as HIV-infected.
Innovation in Aging, 2018
technology (HIT) shows potential for increasing the value of health care. However, HIT use is low... more technology (HIT) shows potential for increasing the value of health care. However, HIT use is lower among older adults and disadvantaged patients. We evaluated the effectiveness of a program for increasing patient portal use and internet access among underserved patients. We conducted a quasi-experimental study of a community health worker (CHW) and digital literacy program to improve patient portal use by disadvantaged patients seen at one urban primary care clinic. Patients met with a clinicbased CHW who explained patient portal use, gave referrals for a free, health-focused digital literacy training program, and identified connectivity barriers. We evaluated the program using electronic health record data (intervention vs. a control clinic) and daily CHW experience logs. In all, 186 patients met with a CHW. Of these, 2% lacked adequate English proficiency to use the portal, 18% were not interested, 26% already were using the portal and 55% expressed interest and were directed to the training program. Based on data from 6-months pre-and 6 months post-implementation, the CHW program was associated with a threefold increase in the rate of first-time patient portal use and double the rate of portal-based visit scheduling for the intervention vs. control site (p = 0.14). Training barriers included lack of transportation, fear/anxiety of internet, and cost of internet service. Perceived benefits included ready access to lab results and proxy access to family members' health information. These results suggest that a novel clinic-based CHW program and community partnership can promote effective HIT use among disadvantaged populations.
JMIR formative research, Jul 27, 2022
Background: Older adults are a high priority for telemedicine given their elevated COVID-19 risk ... more Background: Older adults are a high priority for telemedicine given their elevated COVID-19 risk and need for frequent provider contact to manage chronic illnesses. It seems that many older adults now use smartphones but few studies have examined their overall readiness for telemedicine. Objective: The aim of this study is to survey older primary care patients about their telemedicine preparedness, including internet usage, internet-capable devices, telemedicine experiences and concerns, and perceived barriers. Results were used to inform a telemedicine preparedness training program. Methods: Community-dwelling older adult patients (aged 65-81 years; N=30) with a chronic health condition that could be managed remotely who were present at a family medicine clinic that primarily serves an urban African American population for a prescheduled in-person appointment were asked to complete a brief survey written for this study. Data were collected February-June 2021 at a large, urban, Midwestern hospital. To minimize patient burden, the survey was limited to 10 questions, focused on the most critical topics. Results: Most participants (21/30, 70%) reported having a device that could be used for telemedicine and using the internet. However, about half had only a single connected device, and messaging and video calling were the most commonly used applications. Few used email and none used online shopping or banking. Only 7 patients had had telemedicine appointments. Telemedicine users were younger than nonusers and used more internet functions than nonusers. Only 2 people reported problems with their telemedicine visits (technology and privacy). Nearly all respondents recognized avoiding travel and COVID-19 exposure as telemedicine benefits. The most common concerns were loss of the doctor-patient connection and inability to be examined. Conclusions: Most older adults reported having devices that could be used for telemedicine, but their internet use patterns did not confirm the adequacy of their devices or skills for telemedicine. Doctor-patient conversations could be helpful in addressing telemedicine concerns but device and skill gaps must be addressed as well.
AIDS research and human retroviruses, 1994
Preparations for large-scale trials to test the efficacy of candidate HIV vaccines can benefit in... more Preparations for large-scale trials to test the efficacy of candidate HIV vaccines can benefit in several crucial ways from a targeted program of behavioral and social research. Randomized field experiments testing alternative procedures for the recruitment and retention of subjects can help identify research procedures that will ensure adequate sample sizes while minimizing sample attrition over time. Similarly, assuring that subjects accurately comprehend the potential risks of participation will require more than simply presenting scientifically accurate information. Ensuring both the adequacy and appropriateness of risk communications as well as the accuracy of subject perception of risks (across the social and cultural milieux in which vaccine trials will be undertaken) is a critical task. Ethnographic and behavioral studies can help to ensure that our obligation to obtain truly informed consent from our research subjects is fully met and documented. Monitoring risk behaviors o...
American Journal of Obstetrics and Gynecology, 1997
AIDS Research and Human Retroviruses, 1995
ABSTRACT A Workshop was held November 8, 1994 to discuss actual and theoretical risks for discrim... more ABSTRACT A Workshop was held November 8, 1994 to discuss actual and theoretical risks for discrimination against volunteers in future HIV preventive vaccine efficacy trials. A small proportion of volunteers in ongoing Phase I/II vaccine trials have had positive HIV antibody tests due to vaccine-induced HIV antibody responses. Some volunteers had difficulty obtaining health and life insurance, employment with the U.S. military, and with foreign travel. Study staff were able to resolve almost all such problems. Gay men enrolled in prospective seroincidence studies experienced a 1.6% chance per year of undergoing required HIV antibody tests. Among subjects enrolled in future vaccine trials, the likelihood of such tests resulting in discrimination will depend on the type of vaccine and antibody tests used. The Americans with Disabilities Act may be used to prevent illegal discrimination against those actually, or erroneously thought to be HIV infected. A study is underway to estimate the frequency with which volunteers in a study of gp120 preventive vaccines have actually experienced legal and illegal discrimination as a result of trial participation. Data and Safety Monitoring Boards can evaluate such data and should recommend modification of trial procedures or termination of trials if volunteers experience severe social harm due to their participation in trials.
BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person he... more BACKGROUND Since the COVID-19 pandemic, telemedicine appointments have replaced many in-person healthcare visits [1 2]. However, older people are less likely to participate in telemedicine, preferring either in-person care or foregoing care altogether [3-6]. With a high prevalence of chronic conditions and vulnerability to COVID-19 morbidity and mortality through exposure to others in health care environments, (1-4), promoting telemedicine use should be a high priority for seniors. Seniors face significant barriers to participation in telemedicine, including lower internet and device access and skills, and visual, auditory, and tactile difficulties with telemedicine. OBJECTIVE Hoping to offer training to increase telemedicine use, we undertook a quality improvement survey to identify barriers to, and facilitators of telemedicine among seniors presenting to an outpatient family medicine teaching clinic which serves predominantly African American, economically disadvantaged adults wit...
Over the last several years, there has been rapid growth of digital technologies attempting to tr... more Over the last several years, there has been rapid growth of digital technologies attempting to transform healthcare. Unique features of digital medicine technology lead to both challenges and opportunities for testing and validation. Yet little guidance exists to help a health system decide whether to undertake a pilot test of new technology, move right to full-scale adoption, or start somewhere in between. To navigate this complexity, this chapter proposes an algorithm to help choose the best path toward validation and adoption. Special attention is paid to considering whether the needs of patients with limited digital skills, equipment (e.g., smartphones) and connectivity (e.g., data plans) have been considered in technology development and deployment. The algorithm reflects the collective experience of 20+ health systems and academic institutions that have established the Network of Digital Evidence for Health, NODE.Health, plus insights from existing clinical research taxonomies...
Digital Biomarkers
Background: The Network of Digital Evidence (NODE) was formed to further advance the field of hea... more Background: The Network of Digital Evidence (NODE) was formed to further advance the field of health information technology (HIT) and evidence-based digital medicine at different healthcare institutions nationwide. As the NODE network reviewed the state of the field, it was noted that despite substantial financial and human capital investments, the processes and results of HIT innovation seem chaotic and subpar, especially in comparison to the more wellestablished drug and device industries. During the course of this white paper, we will explore the causes for this observed phenomenon as well as propose possible solutions to improve the state of HIT. Methods: We compared the entire process of discovery, proof of concept, Food and Drug Administration (FDA) review, and postmarket monitoring and distribution/ implementation of HIT innovations to the equivalent processes for drugs and devices. Whereas drug and device innovations are subject to a standardized pipeline of production, HIT innovations are not held to equivalent standards. Conclusions: As a result, HIT lags behind the more mature drug and device industries in producing effective and reliable products. This leads to an inefficient use of already scarce healthcare resources. The authors believe that the HIT industry must adopt many of the mechanisms implemented by the drug and device industries as dictated by their innovation pipelines of discovery, proof of concept, FDA review, and postmarket monitoring and distribution/implementation. We propose an eight-point plan to fundamentally evolve the HIT lifecycle, including reforms for institutions such as neu
Aids Public Policy Journal, Feb 1, 1994
AMA journal of ethics, 2017
This case explores a fictitious hospital's use of co-creation to make a decision about redesi... more This case explores a fictitious hospital's use of co-creation to make a decision about redesign of inpatient units as a first step in incorporating stakeholder input into creation of governing policies. We apply a "procedural fairness" framework to reveal that conditions required for an ethical decision about space redesign were not met by using clinician and patient focus groups to obtain stakeholder input. In this article, we identify epistemic injustices resulting from this process that could undermine confidence in leadership decisions. Suggestions are offered for incorporating stakeholder input going forward that address prior shortcomings. The result should be conditions that are perceived as procedurally fair and decisions that engender confidence in institutional leadership.