Patient Data Access News

Family, Caregiver Engagement HIT Opportunities Can Improve

Health IT has room to play a bigger role in family caregiver engagement efforts.

Health IT has many opportunities to enhance family caregiver engagement.

Source: Thinkstock

By Sara Heath

- Health technology plays a limited role in family caregiver engagement because caregivers have little need and are unable to identify which tools to use, according to recent data from the Massachusetts eHealth Institute (MeHI).

In a survey of 700 unpaid family caregivers, 42 percent said that health IT plays a minor role in their duties as a patient caregiver, and 28 percent said technology plays no role at all. Only 30 percent of respondents said technology plays a large role in engaging them in family member care.

About one-quarter of respondents said this is because they have encountered no need to adopt engagement or care coordination technology. Seventeen percent of surveyed caregivers said they were not aware of helpful apps for their specific needs.

Twenty-nine percent of caregiver respondents said they were deterred by lacking technology interoperability, and 28 percent said they simply did not know which tools they should adopt.

However, when prompted about the functions they would like to see in health technology, these caregivers said they needed tools to help simplify their engagement and care coordination duties.

READ MORE: Family Caregiver Engagement Cuts Hospital Readmissions by 25%

Fifty-seven percent said they needed tools that created easier access to patient health data and lab results and could facilitate data sharing one their loved ones’ providers.

Other desirable technology traits include information seeking (52 percent), explanation of insurance benefits (49 percent), and communication and care coordination with the care team (51 percent).

A smaller market is also emerging to help family caregivers cope with the stresses of taking care of a loved one. Forty-one percent of family caregivers reported that their caregiving duties are the largest responsibilities in their lives, and 47 percent say their duties disrupt their lives at least a fair amount.

Thirty-nine percent of caregivers said they feel like they can seldom take breaks, while 60 percent said they are stressed at least some of the time. Approximately half of respondents also said they are feeling overwhelmed and burned out.

Just under half of the respondents said they wanted health technology to support these challenges. Forty-four percent of respondents said they were interested in technology that connects them with caregiver resources and tools that help them balance caregiver duties with their personal lives.

READ MORE: AARP Law Supports Family Caregiver Engagement in Discharge

Providing assistance – whether it be emotional or for care coordination – to family caregivers is vital.

Forty-three million US adults received care from a non-clinician family member, adding up to an economic value of $470 billion each year. Family caregivers are healthcare money savers and help drive access to home healthcare for patients who do not have engaged family members.

“Digital health technology can help address the adverse health complications that caregivers face by building communities for peer to peer interaction and support, improving the ability for caregivers to monitor health and medications, and assisting in managing everyday tasks,” MeHI Director Laurance Stuntz wrote in the report’s executive summary.

“Innovative technologies also have the potential to help caregivers feel more organized and ultimately more in control.”

MeHI, which is a part of the Massachusetts Technology Collaborative, geared this report toward health technology developers working on tools that can aid family caregivers.

READ MORE: How Patient Health Data Access Drives Patient Engagement

“The survey shows that caregivers experience incredible strain, on their time and their emotions,” said Steve Koczela, President of The MassINC Polling Group, which conducted the survey for MeHI. “Much of what they are dealing with is just juggling everyday tasks. Technology that can help them organize and simplify could make a big difference, though they may not know to go looking for it.”

However, these findings can also spark a national conversation about the role of health IT in family engagement, especially given the influence of strong family engagement on patient well-being. If family caregivers can better manage the information they collect about their loved ones, they can facilitate stronger care coordination that will ideally result in better care.

Having an engaged family member is one of the top strategies for ensuring quality care, according to Jill Harrison, PhD, Director of Research at Planetree.

“When a patient is in the hospital, they need an extra set of eyes and ears to understand things,” Harrison explained in a previous interview. “Having a family member by their bedside after surgery is one of the greatest things a family member can do in terms of safety.”

Family engagement and caregiver support are also integral because of the at-home care they often administer. As noted above, 43 million Americans serve as an unpaid caregiver for a family member. Ensuring that these caregivers have support – via technology and education – will be key for supporting home healthcare.

“By and large, we are discharging patients into the care of family members,” Harrison concluded. “If they are not trained, aware, and educated, patients are likely to end up back in the hospital.”


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