Clinical Data as the Basic Staple of Health Learning Creating and Protecting a Public Good: Workshop Summary (2010) / Chapter Skim
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7 Engaging the Public
7 Engaging the Public
Pages 231-248
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From page 231... ...
Participants provided insights into public perceptions on clinical care data for research and queried the public's interest in health data-supported guid ance and information. Aspects of the public's extent of use of clinical data were also examined.
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From page 232... ...
In part the public is not as fully engaged in the clinical data utility as it could be because much of the current activity takes place out of the public eye, with data residing largely in the private sector, where commercial interests and other factors inhibit sharing. Unless we overcome market obstacles related to sequestering data for proprietary interests and the technical obstacles related to individual identification authorization and related issues, Rein asserts that a full demonstration of the clinical data value proposition for consumers, both individually and collectively, is not possible.
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From page 233... ...
population or promote awareness of how health information can improve clinical decision making for individual treatment. Ideally, the public would express considerable interest in understanding the importance of health information; however, the limitations of current data systems severely inhibit demonstration of the value proposition for consumers -- both individually and collectively.
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From page 234... ...
Although most covered health providers must give notice of privacy practices to patients at the first medical encounter (usually, a notice in which the content is specified by the Health Insurance Portability and Accountability Act, or HIPAA, waiver) (Health Information Privacy, 2009)
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From page 235... ...
One promise of electronic health information exchange is that it could help -- virtually bind -- the various data-holding entities, thereby creating a more integrated care delivery and data management system. However, unless obstacles related to sequestering of data for proprietary interests, as well as technical obstacles related to individual identification authorization and related issues, are addressed, we will not enjoy the electronic exchange of health information that could serve both the individual and public interests.
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From page 236... ...
Exacerbating this state of affairs is the fact that patients have very limited access to or control over how their health information is used and shared, and most institutions have little motivation to share patient information for public research purposes. Ironically, patients likely would support use of their clinical information for public research.
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From page 237... ...
For example, people might be more inclined to contribute clinical information to a county or other community registry if doing so would increase the ability of local health authorities to identify disease trends or anomalies that could indicate an environmental or other health concern (e.g., asthma related to air pollution, or cancer related to toxic waste)
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IMPLICATIONS OF "PATIENTS LIKE ME" DATABASES Courtney Hudson, M.B.A. Cofounder, EmergingMed The longstanding tension between an individual's desire for personalized health information and the population's interest in healthcare research is exacerbated by scientific advances such as molecular profiling, information sharing on the web, and modern data management tools.
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From page 239... ...
healthcare system's desire for population-based research and data sharing in light of modern data management and data-sharing capabilities. EmergingMed is an 8-year-old company founded to help cancer patients obtain access to clinical trials as part of their search for treatment options.
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From page 240... ...
Patients should be able to determine that in 5 minutes; it should not take 8 hours of random Internet searching through 10,000 clinical trials. Fortunately, finding such information quickly is possible now with modern data management tools.
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From page 241... ...
If a person does not understand that breast cancer is treated differently from colorectal cancer and uses different research, he or she is not going to understand the specific questions needed for a clinical trial search. If a breast cancer patient does not understand there is a difference between hormone receptor-positive and hormone receptor-negative cancer, she is not going to understand why tests are being done, why treatments are being recommended, or which clinical trials may be an option.
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From page 242... ...
We do not share patient information with clinical trial sites, but patients can come back to us throughout the process if they need help with logistical information or definitions as the process continues. We are navigators in that respect, but we do not become part of the informed consent process.
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From page 243... ...
A consumer health platform with specialized health search capabilities is the first application/service and the first step in our strategy that centers on delivering a platform that puts users in control of their information so they can access it, store it, and use it however and wherever they want it. Microsoft recognizes that sensitive health information should be protected by strong policies and clear operating standards.
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It is named HealthVault because it serves as a vault for personal health data. It is meant to focus on the consumer.
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From page 245... ...
The year before that we launched a product named Amalga, an enterprise hospital environment software that is meant to automate all the various activities in a hospital. (MedStar actually helped to develop that; we produced the software framework.)
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From page 246... ...
So just as PayPal accelerates the storing and sharing of financial data, HealthVault accelerates the storing and sharing of health data. All of the complexity of dealing with that data securely and privately acknowledges the regulations that are in place, or connects to pharma, or the clinical trial provider, or the recruiters, or those who provide advice about a condition.
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From page 247... ...
. Health Information Priacy.
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