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What's Happening Now

May 7, 2013 11:13 am

In order for EHRs to empower parents and their children, and change their behavior, EHRs and related consumer-facing elements of the record must:
• Open up new communication channels that will improve access to providers and services. These new channels (whether through e-mail, texting, or online) can allow parents to receive reminders, schedule appointments, submit forms, make payments, and discuss their child’s care at times and in a manner that works best for them. Tools like mobile monitoring devices can also help the child and parent consumer remotely communicate important health information, such as glucose levels, to providers.
• Enable a parent to view, print, save, and export a child’s data in a format that can be used, reused, and tracked. For example, the U.S. Department… more »

…of Health and Human Services is working on making a “Blue Button” available to veterans and eventually others that allows consumers to download their health information for their own use from secure Web sites operated by medical practices, hospitals, pharmacies, insurers, and laboratory services.
• Involve families in overseeing the quality of their records. For instance, a parent can review and manage a child’s health record through a patient portal that allows them to identify missing information that could impact the child’s care, rectify any errors, and use the data to populate consistent information across family records and applications.
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May 7, 2013 11:16 am

Families will be more likely to use and share information in their records if they trust the providers and the system to keep their information private and secure. In order to achieve that, EHRs must be required to:
• Educate families on applicable privacy policies and options and enable them to have meaningful control of their own information. For instance, HIT can help consumers embed privacy specifications into the data in their records in order to address what data are available, to whom, and for what purpose. For example, a parent can authorize periodic transmission of immunization records to school authorities and immunization registries while withholding other clinical records.
• Maintain an immutable audit trail that includes read, write, edit, and download tracking. Such systems… more »

…help families monitor the use of their data and can build trust, when combined with vigorous enforcement of privacy rules.
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May 7, 2013 11:22 am

• As identified in the February 2013 GAO report entitled “Human Services: Sustained and Coordinated Efforts Could Facilitate Data Sharing While Protecting Privacy,” many challenges exist to efforts to promote data sharing and interoperability across state and federal agencies. The federal government can play a significant role in promoting cross-program integration – by demanding agencies to think and build systems as part of an integrated enterprise (as has been done through the Medicaid Information Technology Architecture and related 7 Conditions and Standards), providing funding in a manner that supports such integration (such as in the revised cost allocation rules in the OMB A-87 Circular pursuant to the ACA), address concerns about when and how information sharing is allowed… more »

…(such as through recent clarifications of FERPA through the Uninterrupted Scholars’ Act), and supporting the development of standards and requirements as well as specific tools that enable data sharing (as it has done with efforts like the Direct Project).
• While HIPAA is in place to address provider data sharing, there is a need for federal level privacy rules that apply specifically to consumer sharing (and relevant tools, involved entitites). Some states, like California, are beginning to look at this issue themselves, but a patchwork of state rules will not be as effective. Thus, we’d encourage ONC to tackle this challenge and provide guidance to federal lawmakers.
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May 7, 2013 11:25 am

ONC can and should promote the sharing of information by supporting the development of standards and model tools that allow granular segmentation of data, in accordance with the work of the Data Segmentation Initiative and the December 2010 recommendations of the President’s Council of Advisors on Science and Technology. In furtherance of this capability, ONC should promote the ability of providers be able to mark any particular item as confidential at the moment of care.

May 7, 2013 11:26 am

One of the most powerful ways that PGHD can support improved care is by promoting the patient’s ability to oversee the quality of their records. In fact, as more data is automatically flowing into a record, there will be more data to check, some of it questionable, and less time on the part of the provider. Importantly, the patient and/or their family can help with quality control – while also filling in gaps in the record. For instance, a parent can review and manage a child’s health record through a patient portal that allows them to identify missing information that could impact the child’s care, rectify any errors, and use the data to populate consistent information across family records and applications.

May 7, 2013 11:28 am

• The federal government should establish standards and requirements to promote the inclusion of an immutable audit trail that includes read, write, edit, and download tracking in electronic records. In order for PGHD to be trusted and used by providers, it must be easily identifiable – and, they must know that they can rely on the information they put into the record being there when they return to use it. So, it is important that patient generated corrections and/or additions to the material input by a provider be visible along side the original information from the provider and that a standardized process exist for accepting the corrections.

May 7, 2013 11:29 am

• Trends indicate that decision support tools can and are improving the interactions between patients and providers, by helping patients’ understand when it is important to contact the provider (or not) and reminding them about the need for follow-up and self-care. Home-based decision support tools can provide tailored, understandable self-management information that is responsive to an individual’s health or disease experience. For example, Web-based asthma management sites allow children and parents to gauge the severity of an episode and determine appropriate medication strategies or when to seek medical help. In addition, it can help a consumer follow their own care, tests, and medicines, and support them helping the provider make relevant decisions, such as when the tool identifies… more »

…contraindicated prescriptions, prompting a conversation between patient and provider to see whether they’re actually taking the medications and to resolve any problem.
• Electronic communication improving information available to providers through the use of pre-visit questionnaires, surveys, assessment tools, remote monitoring devices, and the like, which allow a patient and/or family member to ensure that a provider receives critical information, despite the time pressures or timing of an appointment, or their absence from the appointment itself (in the case of a remote family caregiver who has important information to share).
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May 7, 2013 11:30 am

• Technology allows for the use of off-site resources that can help meet the unique needs of a specific individual – thus removing disparities that otherwise exist due to location or access to specialty providers. While this function is exemplified by the growing use of telemedicine to increase access to medical providers from remote locations, it is also demonstrated through the use of other basic communications tools such as automated video and voice call center systems are used to ensure that a family at a hospital or clinic system has access to medically trained language interpreters, in real time, within seconds.
• In addition, social networking technology can provide patients/families with information that engages and speaks specifically to individuals and their circumstances.… more »

…For example, social networking sites for children with specific conditions, such as the Starlight program for children with cystic fibrosis, allow families to communicate about medication, treatment, and other common experiences, giving them a uniquely useful body of information that they can evaluate and use as they see fit, in addition to connecting the patients with a supportive community. Such resources can be built for any particular community, whether disadvantaged or linked through a health condition.
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May 7, 2013 11:31 am

• eHealth tools have been used to present useful, clear and well-organized information at the appropriate health literacy level for the user and in multiple languages, thus helping address disparities. For instance, migrant agricultural laborers (through the MiVIA program) can access an electronic personal health record (PHR) for themselves and their children that includes insurance details, a photo for identification, a library of targeted resources in Spanish and English, and other information that can be hard to retain in such mobile lives. And, homeless and emancipating foster youth in Sacramento County, California, have access to critical health, education, and life documents and resources through HealthShack, a PHR developed specifically for that population.

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