Enabling Family Caregivers

The recent pandemic has drawn our attention anew to the plight of family caregivers. The demands placed on these caregivers has increased multifold over the past two years, since COVID-19 has predominantly targeted our senior and chronic illness afflicted populations. This increased need for family members to provide caregiving to their sick spouse, aging parents and grandparents, and disabled siblings has hit women caregivers especially hard.

In turn, this has resulted in more women, and to a lesser degree men, pulling out of the workforce or limiting their hours of work. Recent data from NAC/AARP shows that 53 million Americans engage in some form of caregiving activity in a given year. The monetary value of such caregiving has been estimated at around 500 billion dollars.

The growth of caregiving by family members and friends has been amplified by the worsening shortage of healthcare workers at nursing homes and long-term care facilities during the pandemic. Care facilities now have over 400,000 fewer staff than they did before the pandemic. Unlike child care, which tends to be better accommodated by flexible work hours and on-site day care, once care for a disabled adult starts, it is very likely to continue and often become more complex and time-consuming over time.

While trying to navigate through our fragmented healthcare system caregivers are likely to be faced with an array of physical, mental, technical and financial problems. Struggling to deal with these issues with little prior knowledge or information through “on the job learning” can seem overwhelming. However, there are available resources, support groups and technological solutions to support this journey. These resources and tools can be divided into four main categories: (1) Internet-based resources for caregiver education, information and advice; (2) access to electronic health records through patient portals provided by hospitals, medical centers and clinics; (3) personal monitoring devices for real-time tracking of vital measures, such as pulse rate, blood pressure, blood sugar, pulse oximetry and activity level; and (4) tools that allow for the secure exchange and sharing of electronic medical records between patients and their various providers, as well as permission-enabled family members and caregivers.

(1) Internet-based resources for caregiver education, information and advice

The internet is a rich resource for seeking information about caring for an elderly or disabled family member. General information about specific diseases can be accessed through sites such the National Cancer Institute – www.cancer.gov and the American Cancer Society – www.cancer.org, the American Heart Association – www.heart.org or the Alzheimer’s Association – https://www.alz.org. However, when searching for topics of specific interest to family caregivers, the following resources are a good start for defining and exploring your information and support needs:

  • Family Caregiver Alliance. This site deals with a broad range of caregiving topics, including how to best communicate with medical providers, participate in support groups and engage with digital technology.
  • Caregiver Action Network. This national family caregiver organization provides tips for caregivers, and extensive caregiver toolbox and special websites on cancer and rare diseases.
  • Medline Plus. This site addresses multiple health topics, medications and supplements, genetics of disease, medical tests, demonstration videos and management tools, along with links to many related sites.
  • VA Caregiver Support Program. This specific site for veterans features a toll-free national Caregiver Support Line at 1-855-260-3274.

(2) Patient Portals

Many large hospital systems, medical centers and clinics subscribe to centralized electronic health record (EHR) systems and offer internet patient portals. These are geared almost exclusively to communicate between the patient and the healthcare provider. Some EHR systems allow patients to share access to the portal with family caregivers, although thus far that use has been limited and does not appear to address family caregiver needs. One concern for both consumers and healthcare providers is assuring the privacy and security of information exchanged through such portals (see blog: Patient Information: What is it and how is it protected). Also, importantly, many smaller medical centers and clinics with limited HER systems do not provide patient portals.

(3) Electronic Monitoring and Tracking Devices

These devices can be useful to automatically track, record and monitor vital measures including pulse and respiration rates, blood pressure, pulse oximetry and blood sugar with varying degrees of complexity. The markedly increased popularity of telemedicine during the recent pandemic also points to an increased interest in this field, although patients and caregivers still express preference for direct personal communication and interaction with their providers (see blog: Communicating Safely with Your Doctor).

(4) Direct Exchange of Secure HER Between Patients, Family Caregivers and Providers

In the absence of widespread interoperability of electronic health records, it falls to patients and their caregivers to find ways to communicate with their multiple providers in our fragmented healthcare system. We have all experienced carrying hard copies and CDs of medical records from doctor’s office to doctor’s office. This lack of transparency can lead to breakdown in communication, as well as duplication of laboratory tests, imaging studies and diagnostic procedures, leading to additional expense and risks to the patient.

In order to address these considerable interoperability and transparency problems, the RK360 App, downloadable from Apple and Google Play Stores, allows you as the patient or designated family caregiver to:

(a) Own and exclusively control access to your encrypted RK360TM Cloud Record, including the records of up to 4 permission-enabled family members.

(b) Populate these Cloud Records from Apple-connected EHRs including the VA.

(c) Upload laboratory tests, allergies, medications, medical problems, vaccinations and care plans.

(d) Avoid medical mistakes by sending pre-visit data from your RK360 App to every provider.

(e) After each visit ask providers to send a care plan electronically to your RK360 App, including a summary of recommendations generated during the visit.

The role of the family caregiver has expanded more recently with the advent of an aging population, a national and international pandemic, a shortage of professional caregivers and rising medical costs. The keys to a successful partnership between family caregiver, patient and provider are open communication and secure exchange of healthcare information between all three. The RK360 App provides a ready bridge for forming and growing such a partnership.

Digital Health Privacy by Design.