scholarly journals Research participation preferences as expressed through a patient portal: implications of demographic characteristics

JAMIA Open ◽  
2018 ◽  
Vol 1 (2) ◽  
pp. 202-209 ◽  
Author(s):  
Jihad S Obeid ◽  
Azza Shoaibi ◽  
Jim C Oates ◽  
Melissa L Habrat ◽  
Chanita Hughes-Halbert ◽  
...  

AbstractObjectiveAs patient portals are increasingly used for research recruitment, it is important to examine the demographic makeup of research registries that are populated via portals and the factors that influence participation in these registries.MethodsWe examined the response to a routine research preference questionnaire among patients who were enrolled in a patient portal at an academic health center and characterized the sub-population that responded and was tracked in a research preferences registry. We examined the factors that influence choices in two research preferences: future contact for research opportunities and biobanking of de-identified specimens.ResultsOut of 79 834 patients to whom the questionnaire was sent, 32% responded. Of those 74% agreed to future contact and 77% to the biobank preference. We found significantly lower odds of agreement in both preferences in minority populations, especially in the population >65 years of age when stratified by race. Individuals with higher comorbidity indexes had significantly higher odds for agreement.DiscussionThe disparities in volunteerism as expressed by agreement to future contact and willingness to participate in biobanking are exacerbated by lower levels of enrollment in the patient portal by minorities, especially in the oldest age group. Future work should examine other socioeconomic factors and the differences across age groups, sicker individuals, and payer categories.ConclusionAlthough patient portals can be more efficient for recruitment, researchers have to be cognizant of, and proactively address, potential biases when recruiting participants from these registries.

2019 ◽  
Vol 26 (8-9) ◽  
pp. 703-713 ◽  
Author(s):  
Vaishnavi Kannan ◽  
Kathleen E Wilkinson ◽  
Mereeja Varghese ◽  
Sarah Lynch-Medick ◽  
Duwayne L Willett ◽  
...  

Abstract Objective Determine whether women and men differ in volunteering to join a Research Recruitment Registry when invited to participate via an electronic patient portal without human bias. Materials and Methods Under-representation of women and other demographic groups in clinical research studies could be due either to invitation bias (explicit or implicit) during screening and recruitment or by lower rates of deciding to participate when offered. By making an invitation to participate in a Research Recruitment Registry available to all patients accessing our patient portal, regardless of demographics, we sought to remove implicit bias in offering participation and thus independently assess agreement rates. Results Women were represented in the Research Recruitment Registry slightly more than their proportion of all portal users (n = 194 775). Controlling for age, race, ethnicity, portal use, chronic disease burden, and other questionnaire use, women were statistically more likely to agree to join the Registry than men (odds ratio 1.17, 95% CI, 1.12–1.21). In contrast, Black males, Hispanics (of both sexes), and particularly Asians (both sexes) had low participation-to-population ratios; this under-representation persisted in the multivariable regression model. Discussion This supports the view that historical under-representation of women in clinical studies is likely due, at least in part, to implicit bias in offering participation. Distinguishing the mechanism for under-representation could help in designing strategies to improve study representation, leading to more effective evidence-based recommendations. Conclusion Patient portals offer an attractive option for minimizing bias and encouraging broader, more representative participation in clinical research.


2018 ◽  
Vol 2 (1) ◽  
pp. 53-56 ◽  
Author(s):  
Kelly T. Gleason ◽  
Daniel E. Ford ◽  
Diana Gumas ◽  
Bonnie Woods ◽  
Lawrence Appel ◽  
...  

IntroductionWe developed a service to identify potential study participants through electronic medical records and deliver study invitations through patient portals.MethodsThe service was piloted in a cohort study that used multiple recruitment methods.ResultsPatient portal messages were sent to 1303 individuals and the enrollment rate was 10% (n=127). The patient portal enrollment rate was significantly higher than email and post mail (4%) strategies.ConclusionPatient portal messaging was an effective recruitment strategy.


JAMIA Open ◽  
2018 ◽  
Vol 1 (2) ◽  
pp. 195-201 ◽  
Author(s):  
Azza Shoaibi ◽  
Jihad S Obeid ◽  
Jim C Oates ◽  
Melissa L Habrat ◽  
Leslie A Lenert

AbstractObjectiveObtaining patient permissions for research contact and for surplus tissue use as part of routine clinical practice can improve research participation. This study aims to investigate the difference in patient permissions for use of surplus tissues, and for direct contact for research, using 2 different methods of solicitation.MethodsAn opt-in, population-based approach for gathering research permissions was implemented in 2 methods. The first method, applied a 2-item patient questionnaire delivered through the electronic health record patient portal. The questionnaire composed of 2 questions (1) whether de-identified surplus specimens may be used for research and (2) whether patients could be contacted about research. In the second method, the same questionnaire was physically presented in clinic within the clinical workflow. We used 1 to 1 propensity score matching and multivariate logistic regression to estimate the odds of obtaining permission and the difference between the 2 methods of solicitation.ResultsThe propensity score model matched 8044 observations (4114 submissions in each group). Among the in-clinic submission group, 70.13% provided permission for surplus tissue compared with 66.65% in the patient portal submission group (odds ratio [OR] = 1.20; 95% confidence interval [CI] 1.09–1.32; P < 0.001). Permission for future research contact was similar among in-clinic (65.07%) and patient portal submission (66.65%) groups (OR = 0.94; 95% CI 0.85–1.03; P = 0.175). These trends were consistent among European Americans and African American patients. However, among patients of other race, higher permission for both future contact (OR = 0.58; 95% CI 0.39–0.86; P < 0.007) and surplus tissue use (OR = 0.65; 95% CI 0.43–0.97; P = 0.036) was observed among patient portal submission.DiscussionOur findings suggest that in-clinic solicitation of patient permissions may provide the same opportunity to patients who do not use patient portals and may be associated with higher permission rate for surplus tissue. However, this was primary true for European American and African Americans patients. Patients of other race minorities might respond better to online approaches.ConclusionAdopting a patient-centric approach that combines in-clinic and portal-based administration may be feasible and promising. Further research is required in this area.


1984 ◽  
Vol 51 (01) ◽  
pp. 037-041 ◽  
Author(s):  
K M Weerasinghe ◽  
M F Scully ◽  
V V Kakkar

SummaryCollagen mediated platelet aggregation caused -5.6 ± 6.7% inhibition and +39.1 ± 15.2% potentiation of prekallikrein activation in plasma from normal healthy volunteers between 20–40 and 50–65 years of age, respectively (n = 15, p <0.01). The amouns of platelet factor-four (PF4) released in the two groups were not significantly different. Collagen treatment in the presence of indomethacin caused +11.5 ± 3.6% and +59.6 ± 19.5% potentiation in the 20–40 and 50–65 age groups respectively (p <0.02). Adrenaline mediated platelet aggregation caused -55.2 ± 7.1% and -35.2 ± 8.3% inhibition in the 20–40 and 50–65 age groups, respectively. Collagen treatment of platelet-deficient-plasma and platelet-rich-plasma in EDTA also caused potentiation of prekallikrein activation.The results indicate that the observed degree of prekallikrein activation after platelet aggregation is a net result of the inhibitory effect of PF4 and the potentiatory effect of activated platelets. The potentiatory effect was greater after collagen treatment as compared to adrenaline treatment, and in the 50–65 age group as compared to the 20–40 age group.


2016 ◽  
Vol 3 (2) ◽  
Author(s):  
Mashkoor Ahmad Lone ◽  
Dr. P. Ganesan

The practice of placing deprived children having least or no emotional and material resources, in orphanages has since long been prevailing in socio -economically poor Asian countries. A sample of 30 children residing in orphanage in district Anantnag in the age group of 13-18 years was selected for the present study. Most of the children were found socially and psychologically disturbed. As per Indian Academy Paediatrics (IAP) classification with respect to weight for age the condition was not bad that as approximately 67% percent of the children were found to be normal. In the same way height for age as per Waterloo’s classification shown that more than half of the children were normal. On clinical examination approximately 47% of children were normal, while as rest were suffering from dispigmentation of hair, moon face, xerosis of skin cheilosis, magenta tongue, spongy bleeding gums, oedema, conjuctival xerosis, and mottled dental enamel. The findings indicated that nutritional intake was deficient for all nutrients when compared to, Recommended Daily Allowances Chart (RDA) for all age groups which may be linked to poor planning of menus in orphanages.


Coronaviruses ◽  
2020 ◽  
Vol 01 ◽  
Author(s):  
Verda Tunalıgil ◽  
Gülsen Meral ◽  
Ahmet Katı ◽  
Dhrubajyoti Chattopadhyay ◽  
Amit Kumar Mandal

Abstract:: Epigenetic changes in COVID-19 host, a pandemic-causing infectious agent that globally incapacitated communities in varying complexities and capacities are discussed, proposing an analogy that epigenetic processes contribute to disease severity and elevate the risk for death from infection. Percentages of hospitalization, with and without intensive care, in the presence of diseases with increased ACE2 expression, were compared, based on the best available data. Further analysis compared two different age groups, 19-64 and ≥65 years of age. The COVID-19 disease is observed to be the most severe in the 65-and-higher-age group with preexisting chronic conditions. This observational study is a non-experimental empirical investigation of the outcomes of COVID-19 in different patient groups. Results are promising for conducting clinical trials with intervention groups. To ultimately succeed in disease prevention, researchers and clinicians must integrate epigenetic mechanisms to generate valid prescriptions for global well-being.


Author(s):  
Daniel Stark ◽  
Stefania Di Gangi ◽  
Caio Victor Sousa ◽  
Pantelis Nikolaidis ◽  
Beat Knechtle

Though there are exhaustive data about participation, performance trends, and sex differences in performance in different running disciplines and races, no study has analyzed these trends in stair climbing and tower running. The aim of the present study was therefore to investigate these trends in tower running. The data, consisting of 28,203 observations from 24,007 climbers between 2014 and 2019, were analyzed. The effects of sex and age, together with the tower characteristics (i.e., stairs and floors), were examined through a multivariable statistical model with random effects on intercept, at climber’s level, accounting for repeated measurements. Men were faster than women in each age group (p < 0.001 for ages ≤69 years, p = 0.003 for ages > 69 years), and the difference in performance stayed around 0.20 km/h, with a minimum of 0.17 at the oldest age. However, women were able to outperform men in specific situations: (i) in smaller buildings (<600 stairs), for ages between 30 and 59 years and >69 years; (ii) in higher buildings (>2200 stairs), for age groups <20 years and 60–69 years; and (iii) in buildings with 1600–2200 stairs, for ages >69 years. In summary, men were faster than women in this specific running discipline; however, women were able to outperform men in very specific situations (i.e., specific age groups and specific numbers of stairs).


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Kwang-il Kim ◽  
Eunjeong Ji ◽  
Jung-yeon Choi ◽  
Sun-wook Kim ◽  
Soyeon Ahn ◽  
...  

AbstractWe analyzed the Korean National Health and Nutrition Examination Survey (KNHANES) database to determine the trends of hypertension treatment and control rate in Korea over the past 10 years. In addition, we tried to investigate the effect of chronic medical conditions on hypertension management. We investigated the hypertension prevalence, awareness, treatment, and control rate from 2008 to 2017. KNHANES, which uses a stratified multistage sampling design, is a cross-sectional, nationally representative survey conducted by the Korean government. A total of 59,282 adults (≥ 20 years) were included, which was representative of the total population of around 40 million Koreans per year. The mean age was 50.7 ± 16.4 years and 42.6% were male. The prevalence of hypertension, hypercholesterolemia, diabetes mellitus, and obesity significantly increased over the 10 years. During this period, the hypertension treatment and control rate significantly improved. Hypertension treatment rate was significantly lower in the younger age group compared to the older age group, but the control rate among the treated patients was not significantly different between age groups. The treatment and control rates of hypertension were higher in patients with multimorbidity, which implies that it has a favorable effect on the treatment and control of hypertension. Hypertension treatment and control rate have improved over the past 10 years. The higher treatment and control rate in patients with multimorbidity suggest that the more aggressive surveillance might be associated with the improvement of hypertension treatment and control rate in Korea.


Vaccines ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 152
Author(s):  
Beatrice Zanella ◽  
Angela Bechini ◽  
Benedetta Bonito ◽  
Marco Del Riccio ◽  
Alessandra Ninci ◽  
...  

Background: Varicella is a well-known infectious disease that can have severe complications, also in young children. The Universal Varicella Vaccination (UVV) program was introduced in Tuscany (Italy) in 2003, with a two-dose vaccine schedule given to children between their 13th and 15th month, and at 5–6 years old, as a monovalent for varicella (V) or tetravalent (measles, mumps, rubella and varicella (MMRV)) formulation. Although varicella notifications have dramatically fallen in the last two decades, varicella disease underreporting remains a challenge. Methods: A qualitative immunoenzymatic test (ELISA) was used to measure the presence of anti-varicella antibodies in 165 sera of subjects aged 1–18 years residing in the province of Florence (Italy). Information regarding the anamnestic and vaccination status (including disease notification) was also collected. Results: Our study showed an overall varicella seropositivity of 75.8% (reaching the maximum at 96.3% in the 15–18 years age group). We found that varicella disease notification had been recorded for only 7/165 subjects; however, since 42/165 recalled having had the disease, we can hypothesize that some of them must have been underreported. Furthermore, our study showed that the presence of antibodies after the varicella vaccination remained over time, lasting up to 12 years. Conclusions: Although varicella seroprevalence is <95% in almost all our age groups (except for the 15–18 years age group), our data are encouraging and reflect the success of the introduction of the UVV program and the vaccination campaigns promoted in the Tuscany region.


Author(s):  
Iván Area ◽  
Henrique Lorenzo ◽  
Pedro J. Marcos ◽  
Juan J. Nieto

In this work we look at the past in order to analyze four key variables after one year of the COVID-19 pandemic in Galicia (NW Spain): new infected, hospital admissions, intensive care unit admissions and deceased. The analysis is presented by age group, comparing at each stage the percentage of the corresponding group with its representation in the society. The time period analyzed covers 1 March 2020 to 1 April 2021, and includes the influence of the B.1.1.7 lineage of COVID-19 which in April 2021 was behind 90% of new cases in Galicia. It is numerically shown how the pandemic affects the age groups 80+, 70+ and 60+, and therefore we give information about how the vaccination process could be scheduled and hints at why the pandemic had different effects in different territories.


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