It is based on physicians bringing their knowledge and experience about diagnosis and treatment options to the table, while patients voice their goals and values about their healthcare, including their preferences regarding their degree of involvement in the decision and desire to seek alternatives. Shared decision making in the setting of acute and chronic illnesses has considerable consequences for patients’ lives. To be effective, patients need to readily understand complex information and be able to compare treatment methods by considering their own values and goals.

Building Health Literacy to Support Shared Decision Making

Health literacy refers to how well individuals are able to acquire, process and comprehend medical information in order to be active participants in their healthcare decisions. How readily health information is understood by patients and their caregivers depends on patient characteristics and how the information is presented to them. Digital health technologies have been used and have been shown to improve health outcomes and patient satisfaction with care, but have not been readily available to patients and their family caregivers. However, recent federal legislation has resulted in patients gaining access to an increasing amount of their health information through electronic devices.

The 21st Century Cures Act

The 21^st Century Cures Act and final implementation rule issued in May 2020 promises to make personal health information available to patients on demand. The Act requires that providers with electronic health record systems (EHRs) provide patients with their electronic health records on request within 30 days. Concerns have been raised about making health information, such as critical diagnostic test results, available prior to being able to discuss the results and implications with the provider. However, overall, there have been mostly favorable responses from both patients and providers to this change. Access to clinic notes and reports has been shown to strengthen patients’ levels of trust and goal agreement with their providers. One purpose of the Cures Act is to enhance health information interoperability and transparency, leading to better informed shared decision making between patients and their healthcare providers.

The New Gatekeepers of Personal Health Information

This new ability for patients and family caregivers to more readily access their healthcare information electronically has given rise to the term “e-patient.” Who are E-patients? They are patients (and family caregivers) who are enabled, empowered and engaged in their own healthcare. Motivated by the need to seek information and understand the medical conditions they are facing, e-patients look upon their illness as an opportunity to actively partner with their providers and with the healthcare system at large.

One especially useful tool that facilitates easy access to one’s electronic health records is the RK360 App. It is downloadable from Apple Store and Google Play and allows you as the patient or designated family caregiver to:

• Own and exclusively control access to your encrypted RK360^® Cloud Record, including the records of up to 4 family members.
• Populate these Cloud Records from your providers’ Apple-connected EHRs including the Veterans Administration.
• Upload laboratory tests, allergies, medications, medical problems, vaccinations and care plans.
• Avoid medical mistakes by sending pre-visit data from your RK360® App to every provider.
• After each visit ask providers to send a care plan electronically to your RK360® App, including a summary of recommendations generated during the visit.