This article by Ambra Health CEO, Morris Panner, was originally published in Forbes on March 16, 2021.
As patient portals and electronic medical records proliferate, there’s no denying technology is starting to open up easier access to managing one’s own health journey. But what about those individuals managing a web of online portals for aging parents, children and other family members who might not be as tech-savvy? According to AARP, more Americans than ever before are caring for more than one person.
The tangible benefits of greater IT access for the millions of adults who must manage healthcare for both their children and their aging parents is less clear. The pandemic has likely increased the burden on these “sandwich generation” adults, given how tech-based remote interactions and scheduling have replaced face-to-face interactions.
However, many experts believe that technology, and the cloud in particular, holds the key to not just opening up access to our medical records but providing smarter, more streamlined experiences for individuals and those tasked with caring for family members as well. Think Netflix family accounts, but for medical records.
The moniker “sandwich generation” came into being 40 years ago, referring to caregivers who face growing responsibilities of two different generations — their children and their parents. However, in recent years, new versions have emerged, such as older adults in their 50s or 60s who are wedged between aging parents, adult children and grandchildren. Another group includes slightly younger adults who have young children, parents with medical conditions and aging grandparents.
Research released last year by AARP found that more than one in five Americans are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53 million adults in the United States, up from about 43 million caregivers just five years ago, clearly reflecting our aging population. More Americans (24%) are caring for more than one person, up from 18% in 2015.
The National Alliance for Caregiving provides a stricter definition for sandwich generation members. It estimates that 11 million caregivers provide unpaid care to an adult while also caring for children living in their homes. Women are most likely to be hands-on caregivers for both children and aging parents, while also juggling work responsibilities.
Caregiving Increasingly Tech-Based
Managing healthcare for multiple generations has been complicated by the pandemic, which has disrupted traditional face-to-face encounters between patients and clinicians. For example, researchers found that “30.1 percent of all visits during the pandemic were provided via telemedicine, and there was a 23-fold increase in the weekly number of visits compared with the pre-pandemic period.” These virtual encounters may involve out-of-network providers, and records of these visits are not always accurately reflected in the electronic healthcare records of a patient’s physician’s office or hospital.
Even with the increased use of electronic health records by most healthcare providers over the past decade, adults struggle in gaining access to, managing and making sense of that information. A recent study from my company found that one in three consumers report that they cannot easily access their medical information online.
Many healthcare organizations offer portals that enable consumers to access and read their medical information, but they are not widely used. In 2017, the General Accounting Office reported that nearly 90% of providers were offering patients access to a portal, but fewer than one-third of patients had used the technology. Of those enrolled, only a fifth used their portal regularly.
The difficulties in using portals can complicate caregivers’ efforts to access the medical records of other family members. Portals may provide only partial, siloed glimpses of a person’s medical record or medical details without explanation or context. Sandwich generation caregivers also need to know multiple user names and passwords for various family members’ records, and they also may encounter problems in accessing the records because of privacy concerns or requirements that they obtain healthcare proxies.
However, there’s growing recognition of the high-stress load facing sandwich generation adults — for example, a survey by Haven Life Assurance Agency found that these adults are struggling physically, mentally and financially.
Barriers to accessing health information are being reduced as market forces are helping to facilitate consumer access to healthcare information. There’s increased understanding that informed consumers can make better, cost-effective healthcare decisions, and that bodes well for everyone.
This year, the Centers for Medicare & Medicaid Services (CMS) finalized the CMS Interoperability and Prior Authorization Rule. The intent is to reduce the challenges patients face in taking possession of their data.
This and previous federal regulations aim to give patients access to their information through third-party apps that can connect with providers and payers to obtain health information. The latest rules require certain federal programs to include — as part of the Patient Access API — encounter data and claims data, including laboratory results and information about a patient’s authorization decisions. Other healthcare payers are expected to follow the federal lead to give consumers a wider range of access to patient data.
In addition, health technology companies that offer patient portals are paying more attention to their usability and ease of interaction. Some experts envision a future where seamless platforms can help sandwich generation caregivers manage several individuals’ health records, including both data and imaging.
Other technology organizations, such as health information exchanges (HIEs), which support information sharing for a state or region, are providing capabilities that gather individuals’ health data from those IT systems used by diverse healthcare systems that may serve several family members.
While this initiative is early in development, the overall movement in the market to improve patient engagement and empowerment is expected to widen access to information, and that bodes well for those in the sandwich generation.