Note: These requirements arose from the Group Interviews.
After compiling and reviewing the interview results, the Project developed a set of 22 requirements representing health information tasks for PHRs. These serve as high-level requirements that are being used throughout the project. Listed below are the 22 requirements with brief descriptions.
Requirement 1: The PHR will provide access to the complete medical record (all notes, letters, results, measurements, medications, procedures...).
Participants provided a comprehensive definition of “access.” Multiple participants expressed the need for complete and total access to their entire record including physician notes and letters. In addition, some defined access to extend to any and all devices (phone, tablet, mobile...), not just a computer.
Requirement 2: The PHR will provide informational resources to help healthcare consumers understand any information within the medical record.
Participants referred to the overwhelming amount of information that is often present in clinical documentation and described the need for tools and structure to help patients navigate and understand the information in their medical record.
Requirement 3: The PHR will be organized in way that guides consumers to the most important information in their medical record including diagnosis, medications and results.
Participants described the need to in some way identify the most important and/or useful information within a PHR. The existence of up-to-date problem lists, medications lists, lab results and other common patient chart sections support this requirement (as long as the consumer has access), but the requirement as described by our participants could be interpreted more broadly. For example, the PHR could provide the ability to “bookmark” information the consumer feels is important for quick reference later.
Requirement 4: The PHR will allow consumers to identify and edit or annotate information in their medical record that is out of date or incorrect.
Multiple participants commented on encountering incorrect and/or out-of-date information in their medical record. Given this, they felt it was important to be able to indicate or flag this type of information if not directly correct it themselves.
Requirement 5: The PHR will allow consumers to manage their prescriptions.
Prescription refill is a common feature of all PHR systems, but participants provided more extensive ideas on tools to help manage medications. For example, PHRs could provide the association of medications to a diagnosis, give clear instructions on how to take medications (with or without food, with other meds or not...), include scheduling and tracking applications to help with taking medications on time and even give information related to insurance coverage and available generics.
Requirement 6: The PHR will allow consumers to access, update, correct and manage their history information (medical, surgical, family, social...).
Though related to Requirements 3 and 4, managing their history was especially important to our participants. Due to a perceived lack of coordination and communication among different providers and/or a lack of interoperable patient record systems, many felt the need to manage and reconcile their chart (such as medical and surgical history).
Requirement 7: The PHR will allow consumers to access, update, correct and manage their medication list and immunization history.
Similar to Requirement 6, participants expressed a desire for the same type of access and control of their medication list and immunization history.
Requirement 8: The PHR will allow consumers to easily transfer information to and from other practices, providers or hospitals.
People with disabilities often have multiple medical issues and as a result see multiple care providers including primary care providers, clinical specialists and other healthcare professionals including physical, occupational and/or speech therapists as well as home health nurses and aides. Participants described this as a critical and frequent scenario in their care, indicating a need for interoperability and common standards.
Requirement 9: The PHR will provide access to the medical record in case of an emergency.
In many ways this requirement depends on several other requirements being satisfied, such as identification of most important information, up-to-date and accurate information, access and interoperability. However, in general, consumers with a chronic condition (some with more than one) indicated that this is a high priority.
Requirement 10: The PHR will allow consumers to record and share their treatment goals and concerns with healthcare providers.
This requirement was somewhat “primed” by our use of the topic of goals in our interview design, but participants did respond that it was important to be able to express their issues beyond clinical terminology by identifying what was most important to them as healthcare consumers.
Requirement 11: The PHR will allow consumers to contact their healthcare provider(s) any time they have a question, issue, request or concern.
Participants expressed a need for more versatility in communication channels with improved response time and quality in communicating with their healthcare providers.
Requirement 12: The PHR/EMR will support communication and collaboration between all providers involved in a consumer's care.
This requirement goes beyond the issue of interoperability and exchange of information to promote communication between a consumer's multiple healthcare providers (primary care to specialist, between specialists, etc.). In effect, participants expressed the need for care coordination facilitated by technology.
Requirement 13: The PHR will support scheduling of visits and procedures with an emphasis on helping consumers who face difficulties in arranging/managing transportation schedules so that visits can accommodate their needs.
While scheduling is a common feature of many practice-based PHRs, our participants defined broader and more detailed requirements. For example, as complex healthcare consumers with many challenges in mobility and transportation, people with disabilities often wish to schedule multiple visits within the same healthcare organization on the same day. In these scenarios simple single appointment scheduling tools may fail to manage the complexity of multiple consecutive visits.
Requirement 14: The PHR will support the ability for both providers and consumers to create system reminders and alerts for a wide range of medical issues and tasks.
Beyond the standard reminders available via best practice alerts and other decision support, participants described the need for more extensive reminders and to be able to configure their own reminders and alerts.
Requirement 15: The PHR will provide access to treatment/service/care plans and the capability to download, print or share these documents.
Many of our participants have multiple plans of care requiring access by the consumer, caregivers and family members. Participants stated that having electronic and print access to up-to-date plans would be a very useful feature for any PHR.
Requirement 16: The PHR will be directly integrated with trusted health education content and provide context-based search directly from the medical record.
Participants described a wide range of sophisticated approaches to providing context-based health education, direct from the PHR, many of which describe and/or expand on “info button” approaches. For example, some participants indicated a desire to link directly from a diagnosis, prescription or other information, to trusted, well-written and -produced health education content. Other participants expressed the need for tools to help with medical terminology, such as a system which would provide a quick and easy-to-use medical dictionary for any medical terms that appear in the chart.
Requirement 17: The PHR will provide tools to allow consumers to be more active in monitoring their own health.
Participants expressed the need for a wide range of information tools where they, as healthcare consumers, would be more engaged in tracking and reporting various aspects of their healthcare.
Requirement 18: The PHR will clearly present lab and other test results in a format understandable to consumers as well as offering context-based health education.
While Requirement 16 addresses education in general, this requirement is more focused on support for understanding and interpreting the results of lab tests or studies.
Requirement 19: The PHR will allow consumers to view multiple aspects of their medical information over time.
Participants requested the provision of a time-based structure for organizing healthcare information of all types that would help them understand their health over time and to be more engaged in monitoring their own care.
Requirement 20: The PHR will either provide information and resources to help consumers understand their insurance coverage, costs and options.
Participants expressed the need for tools and information to help them understand the associated coverage and cost of health decisions based on provider, medications, procedures or other treatment decisions.
Requirement 21: The PHR will provide resources and tools to help consumers manage insurance-related processes (referrals, precertification, appeals...).
Beyond understanding coverage in Requirement 20, participants described the need for tools and information resources to manage insurance related processes more efficiently. This included referrals, pre-certifications and determination of coverage.
Requirement 22: The PHR will provide information and tools to help consumers manage the acquisition, maintenance, repair and replacement of medical equipment with an emphasis on accessibility related equipment.
This requirement was, for the most part, discussed by people with physical disabilities and would be applicable to anyone with an illness or injury leading to a home-care situation.
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