October 9, 2017. Janie Appleseed Network announces a new pilot program to teach families how to use personal health record technology. Westerly, RI.
Janie Appleseed Network announces a new pilot program to teach families how to use personal health record technology.
The pilot program will engage families in the use and development of an emerging class of health information technology systems aimed at giving consumers sovereignty over their personal health data. A personal health record system, or PHR, is a digital computer application that helps a consumer store and manage personal health data captured over time. A PHR helps a person collect and use past information to inform present and future health and care choices.
“It’s important for consumers to understand the difference between a PHR and a Patient Portal,” explains Janie Appleseed Network Executive Director Lisa Nelson. “A Patient Portal is a system that is controlled by a healthcare delivery organization. It gives a patient the ability to view and download information that exists in the care organization’s electronic medical record (EMR),” Nelson explains. “What does a patient do with that information once they download it?” she asks. “The idea behind this new class of system is to give consumers a tool they control—a place where the system and the information is theirs,” she explains.
“There’s a new role planned for patients,” says Nelson. “We need to prepare ourselves for the coming changes in healthcare.”
Patient empowerment is being touted as an important part of U.S. healthcare reform. For example, the 21st Century Cures Act (Cures Act), signed into law on December 13, 2016, is designed to help accelerate medical product development and innovation in healthcare. It elevates the importance of “real world evidence” and creates a way to apply useful and timely information used from observational studies, patient input, and anecdotal data so that healthcare can become more of a learning health system.
New “value-based care” payment models compensate providers for managing a patient’s health (fee-for-value) rather than providing care (fee-for-service). The goal is better health for individuals and reduced spending.
“The problem is, you can’t do value-based care if you don’t what patients value,” says Nelson. “We need to modernize the way patients and their families communicate with the members of their care team. There needs to be technology that consumers and patients control—technology that allows consumers to document and exchange information about personal health goals, treatment preference, and care outcomes. Providers and Payers have systems that support their needs. Individuals need a system too. One that does what we want to do with our data, a system that helps us share and protect our health information. That’s what a PHR is designed to do, and that’s why we need consumer feedback when building a PHR.”
The Janie Appleseed Network Pilot will introduce approximately 30 families in the state of Rhode Island to this new type of PHR technology. Families will be selected from six different cohorts:
- families with a new baby born after January 1, 2018 and before June 30, 2018,
- families caring for a child with special needs,
- families caring for an elderly parent,
- families with a family member with a chronic disease,
- families with a family member with substance addiction challenges,
- families with no major health issues and actively focused on staying healthy.
One family member will be enrolled in the program and be trained to enable use of the PHR technology within the entire family. The program enrollee will attend a technology training “boot camp” and then attend monthly feedback sessions to report on her or his experience using the PHR technology within the family. The subscription service for the PHR technology, called MyPHD Wellness Manager, will be provided to participating families at no charge during the pilot.”