Health IT

Care for the Caregiver

“Caregiving often calls us to lean into love we didn’t know possible.” – Tia Walker […]

“Caregiving often calls us to lean into love we didn’t know possible.”
– Tia Walker

In our work with care teams supporting the most complex patients, the role of the caregiver cannot be underestimated. Whether it’s a family member, friend or assigned professional, having the caregiver as an engaged, respected, and supported member of the care team is critical for successful care management and optimal outcomes.

The number of caregivers across the country and investment they make is significant. It is estimated that 65.7 million adults (29% of our U.S. population) are providing care to someone who is ill, disabled or aged. These services are valued at more then $450 billion per year. Everyone is touched in some way by the need to help others get through healthcare challenges – either as parents, children, siblings caring for our family members or witnessing friends support their loved ones during the most challenging times of their lives. We must do something to prioritize the role of the caregiver on the care team and make it easier to do this job.

Challenges Caregivers Face

The job of a caregiver isn’t easy. I know from personal experience and see it daily in my professional life. Caregiving challenges include:

  • Understanding who is on the dynamic cross-continuum care team and their roles
  • Understanding the plan of care and responsibilities for different activities
  • Translating medical terminology and navigating through and tracking high volumes of information
  • Communicating with a fleet of providers
  • Supporting loved ones from distant geographies
  • Managing personal life in addition to being a caregiver

Caregivers need tools purpose-built to address these challenges and help them as they work to facilitate and manage the care of their loved ones. 

The Dynamic Care Team

I have a member of my family with a number of health challenges. The number and type of physicians, their staff, and outside resources is constantly changing as we progress through care. Often the physician I am seeing considers the care team to be themself and their staff, however it is much more complicated than that. My family member’s care team is unique to him – it involves multiple specialists, physical therapists, and home health aids – all in different locations.

Caregivers need a place where at any point in time they can clearly see and understand who is on this dynamic care team, their role, and when and how to contact them. 

The Layperson’s Understanding and Management of a Care Plan

I happen to work in the healthcare industry but a majority of caregivers do not. It can feel impossible to understand the situation and plan due to the complex terms, activities, and high volume of information.

A Caregiver’s Care Plan Needs:

  • Simple way to access the plan of care in language they understand
  • Ability to quickly understand current status and the future path
  • Tasks or activities associated with the plan to be clearly outlined, including defining the individuals responsible for that component and when it needs to be completed. Think of it like project management for healthcare.
  • Ability to participate in updating the plan – sharing what has been a completed and requesting changes. Ideally this is done in a multi-authorable planning space (think of a wiki).
  • Easily share the plan with others

The only way to effectively do all of this is by utilizing technology. Designed appropriately, this solution would be leveraged across all members of the care team as a simple method to facilitate collaborative care planning and communicating updates in real-time across the team.

Caregivers need a simple way to access, understand, share and update the plan of care for the patient they’re managing.

Communicating with the Fleet

Most of us are working full-time jobs in addition to managing the care of a loved one – I’m working during the limited 9-5 office hours of physician offices, and I don’t have time to wait 30 minutes on the phone for the 10 different providers involved in the care of my loved one.

Caregivers need one place to communicate with all of the care team providers, and they need to be able to do this in an asynchronous fashion.

Managing Care from Distant Geographies

Early in our work at ACT.md we had a surgeon on the west coast initiate care with a cancer patient. The patient’s family was located in different parts of the U.S. and other clinical specialists involved in the patient’s care worked on the east coast. This isn’t unusual; often adult children live in different cities than their aging parents and patients spend time in different parts of the country. In the past, providing secure and timely communications around patient care and facilitating discussions was a real challenge. Caregivers located in different cities had to be on-site to understand what was happening in care and how best to support the patient. Luckily, there are new technologies available to address this challenge.

Caregivers need access to technology to engage in discussions, ask questions, and provide access almost real-time updates.

Care for the Caregiver

New York Times blogger Jane Gross recently highlighted in her post, Seeing the Invisible Patient, the critical need for more focus on the individual central to care delivery – the patient caregiver. Caregivers carry a heavy burden for the patient and the broader care team. Caregiving can be like a full-time job; caregivers are trying to manage their own lives while also managing the care for very complex patients. As caregivers lean in to love and support patients through health challenges, healthcare organizations have an opportunity (a responsibility, in my opinion) to support them—it benefits everyone. This must include providing tools to better understand who is on the team, the plan of care, the state of play, and a means to communicate efficiently. As healthcare organizations, we cannot underestimate their value or ignore the need they have for support and recognition. Caregivers are asking for help and represent a significant participant in care to positively impact cost and quality outcomes.

Caregivers must be taken care of by the healthcare system. They need to be given resources and tools to help alleviate the burden of caregiving. 

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Ted Quinn

Ted Quinn is the CEO and Co-founder of ACT.md, a digital health company helping everybody engaged in the healthcare system - clinicians, patients, families, and communities - act together to make health happen, wherever they are.

ACT.md’s Care Coordination Record(TM) promises a better, safer, less expensive, and more flexible approach to managing healthcare’s complex tasks and achieving your organization’s goals. Headquartered in Boston, Mass., ACT.md is privately held and venture funded by the disruptive innovation investment firm, Rose Park Advisors. Learn more at http://www.act.md.

Ted has 20 years of experience leading healthcare IT and technology companies. Prior to ACT.md, Ted served as COO of Vecna Medical, driving revenue growth and new market penetration. Before Vecna, Ted served as President & General Manager of a Taylor Corporation Company, as a Business Manager and Product Manager for the FLEX platform at Teradyne Corporation, and as a management consultant at Accenture.

Ted holds a BS in Economics from Brigham Young University, an MBA from the Harvard Business School, and an unflinching loyalty to the Boston Red Sox.

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