@article {788,
	title = {The SMART Platform: early experience enabling substitutable applications for electronic health records.},
	journal = {J Am Med Inform Assoc},
	year = {2012},
	month = {2012 Mar 17},
	abstract = {ObjectiveThe Substitutable Medical Applications, Reusable Technologies (SMART) Platforms project seeks to develop a health information technology platform with substitutable applications (apps) constructed around core services. The authors believe this is a promising approach to driving down healthcare costs, supporting standards evolution, accommodating differences in care workflow, fostering competition in the market, and accelerating innovation.Materials and methodsThe Office of the National Coordinator for Health Information Technology, through the Strategic Health IT Advanced Research Projects (SHARP) Program, funds the project. The SMART team has focused on enabling the property of substitutability through an app programming interface leveraging web standards, presenting predictable data payloads, and abstracting away many details of enterprise health information technology systems. Containers-health information technology systems, such as electronic health records (EHR), personally controlled health records, and health information exchanges that use the SMART app programming interface or a portion of it-marshal data sources and present data simply, reliably, and consistently to apps.ResultsThe SMART team has completed the first phase of the project (a) defining an app programming interface, (b) developing containers, and (c) producing a set of charter apps that showcase the system capabilities. A focal point of this phase was the SMART Apps Challenge, publicized by the White House, using http://www.challenge.gov website, and generating 15 app submissions with diverse functionality.ConclusionKey strategic decisions must be made about the most effective market for further disseminating SMART: existing market-leading EHR vendors, new entrants into the EHR market, or other stakeholders such as health information exchanges.},
	issn = {1527-974X},
	doi = {10.1136/amiajnl-2011-000622},
	author = {Mandl, Kenneth D and Mandel, Joshua C and Murphy, Shawn N and Bernstam, Elmer Victor and Ramoni, Rachel L and Kreda, David A and McCoy, J Michael and Adida, Ben and Kohane, Isaac S.}
}
@proceedings {512,
	title = {Indivo X: Developing a Fully Substitutable Personally Controlled Health Record Platform},
	year = {2010},
	month = {11/2010},
	abstract = {To support a rich ecosystem of third-party applications around a personally controlled health record (PCHR), we have redesigned Indivo, the original PCHR, as a web- based platform with feature-level substitutability. Core to this new release is the Indivo X Application Program- ming Interface (API), the contract between the PCHR platform and the end-user apps. Using rapid iterative de- velopment to build a minimal feature set from real-world requirements, the resulting Indivo X API, now in public stable beta, is enabling developers, including third-party contributors, to quickly create and integrate novel fea- tures into patients{\textquoteright} online records, ultimately building a fully customizable experience for diverse patient needs.},
	url = {http://proceedings.amia.org/127eoo},
	author = {Adida, Ben and Sanyal, Arjun and Zabak, Steve and Kohane, Isaac S. and Mandl, Kenneth D}
}
@article {19403467,
	title = {Acceptability of a personally controlled health record in a community-based setting: implications for policy and design.},
	journal = {Journal of medical Internet research},
	volume = {11},
	year = {2009},
	month = {2009},
	pages = {e14},
	abstract = {BACKGROUND: Consumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft{\textquoteright}s HealthVault, and the Dossia platform, based on Indivo. OBJECTIVE: To understand the acceptability, early impacts, policy, and design requirements of PCHRs in a community-based setting. METHODS: Observational and narrative data relating to acceptability, adoption, and use of a personally controlled health record were collected and analyzed within a formative evaluation of a PCHR demonstration. Subjects were affiliates of a managed care organization run by an urban university in the northeastern United States. Data were collected using focus groups, semi-structured individual interviews, and content review of email communications. Subjects included: n = 20 administrators, clinicians, and institutional stakeholders who participated in pre-deployment group or individual interviews; n = 52 community members who participated in usability testing and/or pre-deployment piloting; and n = 250 subjects who participated in the full demonstration of which n = 81 initiated email communications to troubleshoot problems or provide feedback. All data were formatted as narrative text and coded thematically by two independent analysts using a shared rubric of a priori defined major codes. Sub-themes were identified by analysts using an iterative inductive process. Themes were reviewed within and across research activities (ie, focus group, usability testing, email content review) and triangulated to identify patterns. RESULTS: Low levels of familiarity with PCHRs were found as were high expectations for capabilities of nascent systems. Perceived value for PCHRs was highest around abilities to co-locate, view, update, and share health information with providers. Expectations were lowest for opportunities to participate in research. Early adopters perceived that PCHR benefits outweighed perceived risks, including those related to inadvertent or intentional information disclosure. Barriers and facilitators at institutional, interpersonal, and individual levels were identified. Endorsement of a dynamic platform model PCHR was evidenced by preferences for embedded searching, linking, and messaging capabilities in PCHRs; by high expectations for within-system tailored communications; and by expectation of linkages between self-report and clinical data. CONCLUSIONS: Low levels of awareness/preparedness and high expectations for PCHRs exist as a potentially problematic pairing. Educational and technical assistance for lay users and providers are critical to meet challenges related to: access to PCHRs, especially among older cohorts; workflow demands and resistance to change among providers; inadequate health and technology literacy; clarification of boundaries and responsibility for ensuring accuracy and integrity of health information across distributed data systems; and understanding confidentiality and privacy risks. Continued demonstration and evaluation of PCHRs is essential to advancing their use.},
	author = {Weitzman, Elissa R and Kaci, Liljana and Mandl, Kenneth D}
}
@article {20351824,
	title = {Mychildren{\textquoteright}s: integration of a personally controlled health record with a tethered patient portal for a pediatric and adolescent population.},
	journal = {AMIA ... Annual Symposium proceedings / AMIA Symposium. AMIA Symposium},
	volume = {2009},
	year = {2009},
	month = {2009},
	pages = {65-9},
	abstract = {Personally controlled health records (PCHRs) and patient portals are increasingly being offered by healthcare institutions, employers, insurance companies and commercial entities to allow patients access to their health information. Both applications offer unique services to provide patients with tools to manage their health. While PCHRs allow users ubiquitous, portable, patient controlled access to their health information, traditional patient portals provide provider-tethered applications allowing patients access, but not control of, certain healthcare information, as well as communication and administrative functions, such as secure messaging, appointment management and prescription refill requests, facilitating care at a specific healthcare facility.We describe our approach for the design, content creation, policy development, and implementation of MyChildren{\textquoteright}s, a unique web-based application leveraging the advantages of both a provider-tethered patient portal and a PCHR to allow patients and their guardians access to the functionality and convenience of a traditional patient portal, as well as the portability and flexibility of a PCHR.},
	author = {Bourgeois, Fabienne C and Mandl, Kenneth D and Shaw, Danny and Flemming, Daisy and Nigrin, Daniel J}
}
@article {17947615,
	title = {Early experiences with personal health records.},
	journal = {Journal of the American Medical Informatics Association : JAMIA},
	volume = {15},
	year = {2008},
	month = {2008 Jan-Feb},
	pages = {1-7},
	abstract = {Over the past year, several payers, employers, and commercial vendors have announced personal health record projects. Few of these are widely deployed and few are fully integrated into ambulatory or hospital-based electronic record systems. The earliest adopters of personal health records have many lessons learned that can inform these new initiatives. We present three case studies--MyChart at Palo Alto Medical Foundation, PatientSite at Beth Israel Deaconess Medical Center, and Indivo at Children{\textquoteright}s Hospital Boston. We describe our implementation challenges from 1999 to 2007 and postulate the evolving challenges we will face over the next five years.},
	author = {Halamka, John D and Mandl, Kenneth D and Tang, Paul C}
}
@article {18755989,
	title = {Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients.},
	journal = {Journal of the American Medical Informatics Association : JAMIA},
	volume = {15},
	year = {2008},
	month = {2008 Nov-Dec},
	pages = {737-43},
	abstract = {Personally controlled health records (PCHRs) enable patients to store, manage, and share their own health data, and promise unprecedented consumer access to medical information. To deploy a PCHR in the pediatric population requires crafting of access and security policies, tailored to a record that is not only under patient control, but one that may also be accessed by parents, guardians, and third-party entities. Such hybrid control of health information requires careful consideration of both the PCHR vendor{\textquoteright}s access policies, as well as institutional policies regulating data feeds to the PCHR, to ensure that the privacy and confidentiality of each user is preserved. Such policies must ensure compliance with legal mandates to prevent unintended disclosures and must preserve the complex interactions of the patient-provider relationship. Informed by our own operational involvement in the implementation of the Indivo PCHR, we provide a framework for understanding and addressing the challenges posed by child, adolescent, and family access to PCHRs.},
	author = {Bourgeois, Fabienne C and Taylor, Patrick L and Emans, S Jean and Nigrin, Daniel J and Mandl, Kenneth D}
}
@article {17850667,
	title = {Indivo: a personally controlled health record for health information exchange and communication.},
	journal = {BMC medical informatics and decision making},
	volume = {7},
	year = {2007},
	month = {2007},
	pages = {25},
	abstract = {BACKGROUND: Personally controlled health records (PCHRs), a subset of personal health records (PHRs), enable a patient to assemble, maintain and manage a secure copy of his or her medical data. Indivo (formerly PING) is an open source, open standards PCHR with an open application programming interface (API). RESULTS: We describe how the PCHR platform can provide standard building blocks for networked PHR applications. Indivo allows the ready integration of diverse sources of medical data under a patient{\textquoteright}s control through the use of standards-based communication protocols and APIs for connecting PCHRs to existing and future health information systems. CONCLUSION: The strict and transparent personal control model is designed to encourage widespread participation by patients, healthcare providers and institutions, thus creating the ecosystem for development of innovative, consumer-focused healthcare applications.},
	url = {http://www.biomedcentral.com/1472-6947/7/25/},
	author = {Mandl, Kenneth D and Simons, William W and Crawford, William C R and Abbett, Jonathan M}
}
