Information Infrastructure for Consumer Health

Thornewill, Judah; Dowling, Alan F.; Cox, Barbara; Esterhay, Robert J.

doi:10.1016/j.amepre.2011.01.010

Cited by 16 publications

(5 citation statements)

References 18 publications

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“…Researchers have considered issues of sustainability in related domains, such as quality improvement, 6 – 8 public health, 9 , 10 and biological databases. 11 In each of these areas, they have identified the elements that needed to be sustained and factors that influence sustainability.…”

Section: Sustainability Factors: Assets Expansion Complexity and Smentioning

confidence: 99%

“…A challenge in sustaining an infrastructure is that the continued support will be based on the ability of the infrastructure to demonstrate value. 8 While the initial investment might be justified on the potential of the benefits, continued support for maintenance and expansion is not likely without first receiving some benefit. This lesson is a direct relationship between assets and stakeholders—the value of the assets is defined by their value to stakeholders, who can then determine whether to participate in sustaining the assets.…”

Section: Summary Observationsmentioning

confidence: 99%

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Sustainability Considerations for Health Research and Analytic Data Infrastructures

Wilcox

Randhawa

Embí

et al. 2014

eGEMs

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Introduction:The United States has made recent large investments in creating data infrastructures to support the important goals of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER), with still more investment planned. These initial investments, while critical to the creation of the infrastructures, are not expected to sustain them much beyond the initial development. To provide the maximum benefit, the infrastructures need to be sustained through innovative financing models while providing value to PCOR and CER researchers.Sustainability Factors:Based on our experience with creating flexible sustainability strategies (i.e., strategies that are adaptive to the different characteristics and opportunities of a resource or infrastructure), we define specific factors that are important considerations in developing a sustainability strategy. These factors include assets, expansion, complexity, and stakeholders. Each factor is described, with examples of how it is applied. These factors are dimensions of variation in different resources, to which a sustainability strategy should adapt.Summary Observations:We also identify specific important considerations for maintaining an infrastructure, so that the long-term intended benefits can be realized. These observations are presented as lessons learned, to be applied to other sustainability efforts. We define the lessons learned, relating them to the defined sustainability factors as interactions between factors.Conclusion and Next Steps:Using perspectives and experiences from a diverse group of experts, we define broad characteristics of sustainability strategies and important observations, which can vary for different projects. Other descriptions of adaptive, flexible, and successful models of collaboration between stakeholders and data infrastructures can expand this framework by identifying other factors for sustainability, and give more concrete directions on how sustainability can be best achieved.

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Section: Sustainability Factors: Assets Expansion Complexity and Smentioning

confidence: 99%

Section: Summary Observationsmentioning

confidence: 99%

Sustainability Considerations for Health Research and Analytic Data Infrastructures

Wilcox

Randhawa

Embí

et al. 2014

eGEMs

View full text Add to dashboard Cite

show abstract

“…4–10 However, to date, the impact of disclosing a GRS in person and placing this information in patients’ EHRs on patients’ attitudes toward incorporation and use of genetic risk information and other personal health information in the EHR has not been studied. Several studies have addressed patients’ attitudes toward EHR use, 11–16 but not specifically in the context of GRS disclosure. Assessing patient attitudes may help guide EHR-based preventive measures in precision medicine, in particular for coronary heart disease (CHD).…”

Section: Introductionmentioning

confidence: 99%

Disclosing Genetic Risk for Coronary Heart Disease: Attitudes Toward Personal Information in Health Records

Brown

Jouni

Marroush

et al. 2017

American Journal of Preventive Medicine

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Introduction Incorporating genetic risk information in electronic health records (EHRs) will facilitate implementation of genomic medicine in clinical practice. However, little is known about patients’ attitudes toward incorporation of genetic risk information as a component of personal health information in EHRs. This study investigated whether disclosure of a genetic risk score (GRS) for coronary heart disease influences attitudes toward incorporation of personal health information including genetic risk in EHRs. Methods Participants aged 45–65 years with intermediate 10-year coronary heart disease risk were randomized to receive a conventional risk score (CRS) alone or with a GRS, from a genetic counselor followed by shared decision making with a physician using the same standard presentation and information templates for all study participants. The CRS and GRS were then incorporated into the EHR and made accessible to both patients and physicians. Baseline and post-disclosure surveys were completed to assess whether attitudes differed by GRS disclosure. Data were collected from 2013 to 2015 and analyzed in 2015–2016. Results GRS and CRS participants reported similar positive attitudes toward incorporation of genetic risk information in the EHR. Compared with CRS participants, participants with high GRS were more concerned about the confidentiality of genetic risk information (OR=3.67, 95% CI=1.29, 12.32, p=0.01). Post-disclosure, frequency of patient portal access was associated with positive attitudes. Conclusions Participants in this study of coronary heart disease risk disclosure overall had positive attitudes toward incorporation of genetic risk information in EHRs, although those who received genetic risk information had concerns about confidentiality.

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“…Although HIE's also have the potential to seamlessly share health data, they involve proprietary vendors working through interoperability issues with not only the state or federal entities, but also other proprietary entities. Thornewill et al noted that HRB's offer a unique solution to the complex business aspects of data sharing by placing the consumer at the center of the model [15]. The study also noted that not just one HRB would be sufficient, but a network of HRB's that were administered by non-profit organizations would be relatively low cost and ensure portability of patient data [15].…”

Section: Related Work a Literature Reviewmentioning

confidence: 99%

“…Thornewill et al noted that HRB's offer a unique solution to the complex business aspects of data sharing by placing the consumer at the center of the model [15]. The study also noted that not just one HRB would be sufficient, but a network of HRB's that were administered by non-profit organizations would be relatively low cost and ensure portability of patient data [15]. The major software achievement needed for this concept paper is mapping between FHIR and C-CDA.…”

Section: Related Work a Literature Reviewmentioning

confidence: 99%

Development of an Integrated Service Model to Achieve Personal Health Libraries for Consumers

Gauss¹

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Information Infrastructure for Consumer Health

Cited by 16 publications

References 18 publications

Sustainability Considerations for Health Research and Analytic Data Infrastructures

Sustainability Considerations for Health Research and Analytic Data Infrastructures

Disclosing Genetic Risk for Coronary Heart Disease: Attitudes Toward Personal Information in Health Records

Development of an Integrated Service Model to Achieve Personal Health Libraries for Consumers

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