Developing Digital Tools to Support the Lives of Caregivers and Veterans

This post is the fourth and last in a series produced for a Harvard Kennedy School field class on innovation in government. Our team is working with the U.S. Department of Veterans Affairs (VA) to improve services for family caregivers.

Meet Jeannette. She is a caregiver to her daughter, a Veteran who was injured in the Iraq War. After years of helping care for her daughter’s injury, Jeannette still searches for opportunities for herself. She needs “me time.”

Meet Bryce. He is the husband to an Afghanistan War Veteran who returned from combat with a traumatic brain injury (TBI). Bryce started to embrace this delicate role as both spouse and caregiver, and while he has sought help from VA, he’s also seeking tools that can help him teach himself as well as assistance and understanding from the community.

Thirteen weeks ago, our multi-disciplinary team from Harvard University came together to focus on family caregivers like Jeannette and Bryce. Through user research, prototyping, and user testing, our team developed a set of recommendations for how the U.S. Department of Veterans Affairs (VA) and the United States Digital Service at VA (DSVA) could more effectively serve family caregivers through digital tools.

Our user research found caregivers prioritize Veterans’ needs before their own; receive little formal onboarding and seek ongoing resources; suffer from little social and integrated support beyond engagement with their peers; and strive for a sense of normalcy, stability, and balance in their lives and in their care of the Veteran.

From these insights, we developed prototypes that led to our primary recommendation: a caregiver portal focused on accessibility, information, and connection, matched with a coordinator-facing secure messaging tool.

You can view our latest prototype here.

The Caregiver Portal features four key initial product elements:

1. Dedicated online account for caregivers: Caregivers and experts identified the need for a dedicated online caregiver account that would formally recognize caregivers and enable direct access to health and provider communication and information. A single sign-on would empower the caregiver to obtain and improve their own care—including respite and clinical care—and manage connected benefits. Caregiver accounts would also make this population more visible for VA.

2. Caregiver profile: A caregiver profile would offer the caregiver a personal and detailed identity. A caregiver profile would enable a simplified “onboarding” for new caregivers and allow VA to better assess the caregiver community and allocate resources according to evolving needs. An editable caregiver profile could also increase the customization of coordinators’ care recommendations. If de-identified and aggregated to protect privacy, caregiver profile data could be published as a “caregiver census” to inform further research and program design.

3. Secure messaging: The secure messaging tool would enable the caregiver to securely message with their coordinator and, eventually, other providers, to manage their care. Caregivers currently rely on phone, email, or resource-intensive in-person meetings to discuss aspects of care. As caregivers are often managing care for the Veteran, reducing the delay in conversation through a secure messaging system could increase caregiver engagement with the overall system of care and enable VA to improve care quality.

4. Resources: VA does not currently maintain a space for caregivers to easily find relevant resources customized to their needs. Navigating this dense network of tools and tips can be a challenge even for seasoned caregivers. To more effectively direct caregivers to existing programs, VA could implement a hub for VA-supported and -eligible resources. 

Next Steps

To help with implementation, we created the above sample rollout plan and identified existing products that were similar to our proposed features. For instance, perhaps our portal could leverage identity and login functionality from VA’s myhealthevet, the existing veterans' online health administration platform. To build a caregiver portal, we would suggest an interdisciplinary team that would include a user experience designer, a technologist, and a product manager.

We are confident that our proposed solution has tremendous potential to impact the lives of both new and experienced caregivers, their Veterans, and improve the day-to-day experience of caregiving. We are hopeful and excited to see what DSVA and VA take from our team's work moving forward!

Thank You

Thank you to DSVA and others across VA who partnered with us on this important project. Thank you to the DPI-663 teaching team for serving as mentors and advisors.

And most importantly, thank you to those within the caregiver space, from the experts to caregivers themselves, for providing us with insights from years of experience and analysis behind them. We have learned so much from you and stand with you!

Our team members in front of the White House during our visit to D.C. to share our final presentation with White House and VA officials

Kate Spies, Dani Cinali, Amelia Sampat, Brandon Lee, and Matthew Spector

Building friendly robots – and other new ideas for caregiving

This post is the third in a series produced for a Harvard Kennedy School field class on innovation in government. Our team is working with the U.S. Department of Veterans Affairs (VA) to improve services for family caregivers.

"But don't forget the Alexa!" Matt repeated, exasperated at our efforts. Holding a purple sticker, his hand waved over a table chock-full of papers and contraptions, including mock-ups of training videos, calendars, forums, and even "Berto," an adorable, smart drug-dispensing robot.

It was a Tuesday night at Harvard's Science Center when our team reconvened after spring break to begin finding the best answer for our guiding question:

How can we better support family caregivers, particularly through digital tools and services?

Equipped with this mission and the insights gained from speaking with more than 20 caregivers, we left for spring break with a commitment to developing at least ten ideas each of how to address this question. We returned ready to discuss the different solutions we had brainstormed and developed into real-life examples through cardboard cutouts and mock iPhone screens.

Our team produced 42 distinct, yet interconnected ideas and from there, Kate led us through rounds of voting, each more difficult than the last. We voted according to how completely each idea would solve the issues we heard caregivers express. It was clear each of us had chosen to tackle slightly different problems facing the caregiver community so we ended up spending a good deal of time discussing how ideas should be combined.

Our team members reviewing and narrowing down our ideas. The 42 prototypes included two robots, training videos, caregiver portals, and calendar applications

We ultimately agreed on three main ideas, each taking a different path towards resolving the conflicts and concerns caregivers had shared with our team:

1. Caregiver Forum

We've found that caregivers often learn the most from one another. Their unique situation makes it difficult for civilians to sympathize and provide adequate guidance. To meet this need, we've sketched out a website where caregivers can easily connect to one another according to location or other filtered categories such as branch of service, era of conflict, etc. If a caregiver is simply searching for a listening ear, he or she could easily find another caregiver to turn to, and if they seek information about navigating VA, they could join a chatroom tackling those issues. It would also provide training videos and links offering help on anything from financial planning to respite care.

2. caregiving.vets.gov Website

This webpage, part of the larger vets.gov, would personalize resources for the caregiver according the caregiver’s answers to a few questions about their lifestyle. After all, a caregiver living in rural Missouri has different needs and resources available than a caregiver living in New York City.

3. Caregiving Coordinator Administrator

Our final idea includes a centralized application that allows caregiver coordinators (the VA social workers and professionals who help caregivers navigate the health system) to easily access information about caregivers in their local area and hopefully provide quicker and more effective support. Any needs from a caregiver could be quickly delegated and answered by the coordinator through the use of the app.

We look forward to working with VA to narrow down our three prototypes to one final idea that we can test with caregivers.

Dani Cinali, Brandon Lee, Amelia Sampat, Katherine Spies and Matthew Spector

Peering into the Life of a Caregiver

This post is the second in a series produced for a Harvard Kennedy School field class on innovation in government. Our team is working with the U.S. Department of Veterans Affairs (VA) to improve services for family caregivers.

We knew our goal was to work with the U.S. Department of Veterans Affairs (VA) to develop a digital tool to better support informal caregivers — family and friends who care for a Veteran. We knew that a huge part of meeting that goal was to speak directly to caregivers and understand their daily experiences. But what we didn’t know was the depth and complexity of caregivers’ lives that we would uncover. After 25 interviews with caregivers, a dozen interviews with Veterans, two in-person site visits, and more than a dozen interviews with experts working across support, advocacy, and think tank organizations, here’s what we found:

Identity

“One of the ways I found out I was a true caregiver—in 2009, in middle of the night, I was picked up and thrown across the room.” 

When Veterans return from service, their family members and close friends can face a major change in identity, but these family members don’t always identify as caregivers. Shifting their time away from career goals and personal aspirations, they put the Veteran first, and step into a role that includes juggling appointments and medication refills, raising a family, and running to the Veteran’s side when they wake up with nightmares in the middle of the night. Without even realizing it, these informal caregivers step into their role and work to absorb the pain of the Veteran while silently letting go of time for self-care.

Navigating a complex system

“The VA told me, ‘we don't have space for you, we [only] just started dealing with the Vietnam veterans.’”

Caregivers often find it difficult to locate or access the help they need, and in the early stages of their journey, they don’t always know how to connect with local resources and support that could make their lives easier. Many caregivers also struggle to understand eligibility requirements during the application process for caregiver support programs, only to receive a short letter in the mail stating that they did not qualify.

Lack of Support

“The civilian world doesn't get it. They don't understand where we're coming from, and I'd rather have someone who knows what I'm going through to open up with.” 

Being the caregiver of a Veteran is a unique experience, with complexities that can best be understood by a fellow caregiver. As a result, many caregivers do not rely on formal networks to meet their needs. Rather, social media and online forums are connecting caregivers and providing emotional support and provide this group with the connection and support they need, in the most efficient way possible.

Balance

“I was teaching psychology at a local college. That was my ‘me time.’ That was my get-away, escape time. And I had to cut back … I had to give that up for his care.” 

Finding ways to de-stress and maintain peace of mind can be challenging, especially when many caregivers have way too much on their plates. They are often managing upcoming healthcare appointments for their Veteran, assisting their Veteran with simple daily activities like eating or using the bathroom, and caring for school-aged children.

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The challenges that caregivers face are both real and personal. Various parts of the interview process forced us to take a step back and take a moment to fully digest the emotional heaviness of the interviews. But these insights have made us incredibly eager to brainstorm innovative ways to transform the lives of caregivers for the better.

Dani Cinali, Brandon Lee, Amelia Sampat, Matthew Spector, and Katherine Spies

How does an American hero find a hero?

Meet Jeff, a Veteran.  It has been three years since he returned from deployment in Afghanistan with the Marine Corps, and transitioned into a civilian life with a Traumatic Brain Injury, or TBI. For Jeff, getting up often feels impossible, sleeping comes in fits and starts, and he no longer remembers to take his medicines. But Jeff has hope: his spouse Paula, his full-time caregiver and parent to their children, is his personal hero.

Introduction. Of the more than 20 million Veterans in the United States, an estimated 5.5 million rely on a caregiver. Informal or family caregivers are a network of family, friends, and loved ones who support Veterans and enable them to access care and critical benefits. They are often jointly a case worker, spouse, parent, social worker, scheduler, advocate, medical records translator, financial expert, and navigator. These caregivers are an important connection to the broader system of care: as the physical and psychological impacts of service are better understood, “invisible wounds” like post-traumatic stress disorder and TBI increase the costs, standards, nature and measure of care, in addition to more visible challenges. Caregivers are often the first line of engagement around new ideas and approaches to care; according to former Senator Elizabeth Dole (R–SC), who has led a  national effort to define the role of the caregiver, “no national strategy exists to support caregivers…[and] it’s time to recognize, assist, include, support, and engage them.”

Reimagining Caregivers’ Access to Service, Solutions, and Community. The U.S. Department of Veterans Affairs is working to reimagine how it can meet Veterans’ evolving needs, including expanding offerings to caregivers to supplement existing services like the VA Caregiver Support portal (pictured below).

The current portal for the U.S. Department of Veterans Affairs caregiver support – caregiver.va.gov

This semester, our team of five Harvard students in a field class on Technology and Innovation in Government will help VA answer this challenge. Our areas of expertise:

Dani Cinali previously worked in policy in the New York State Governor’s Office, where she focused on streamlining State government operations and improving service delivery. Immediately prior to graduate school, she was a research consultant conducting consumer insights studies focused on innovation strategy, branding and market segmentation. A dual degree student between HKS and Tuck, her interests lie at the intersection of technology, business, and social impact.

Brandon Lee is an undergraduate at Harvard College studying Computer Science and Statistics. He likes to dig into data and make predictions. He has previously worked for Overstock.com, where he developed in-house “extract, transform and load” and classification apps within a larger data science pipeline for automated bidding on display advertisements. Following graduation, he looks forward to serving in the Marine Corps.

Amelia Sampat is a former child advocate and consultant, and current master in public policy candidate at the Kennedy School. Sampat’s leadership and advocacy for children in foster care included case management, analyzing case problems, and presenting recommendations in court. She is a former consultant with Booz Allen Hamilton working on client projects with Veterans Affairs, and most recently served as a consultant for mass.gov to measure the public value of its digital redesign.

Matthew Spector is a strategic communicator and former journalist. He most recently served as a visiting researcher in governance studies at the Brookings Institution, and he has previously worked in digital, social media, messaging and consulting for public and private sector clients, including IBM’s Smarter Cities Challenge, Mark Zuckerberg’s FWD.us immigration initiative, Obama for America 2012, UNICEF global public advocacy and UN Refugee’s New York content laboratory. He currently pursues a master’s in public policy at the Kennedy School.

Katherine Spies is an AH-1 attack helicopter pilot, experimental test pilot, and dedicated advocate for women in science, technology, engineering, arts, and mathematics. As an AH-1 pilot, Katherine flew over 320 hours in combat, leading more than 100 combat missions. As the Marine Corps’ first female helicopter test pilot, she flew over 30 types of fixed and rotary wing aircraft in support of Department of Defense aviation acquisitions. As a mentor and public speaker, Katherine leads initiatives for non-profits, schools, and Fortune 100 companies. Currently, Katherine is jointly enrolled in the Harvard School of Engineering and Applied Science and the Harvard Graduate School of Design.

Our team is focused initially on understanding the caregiver and their challenges. Family caregivers face increased personal risks, from shorter lives to increased anxiety and behavioral health issues. In addition to existing strain on caregivers, generational divides have made Veteran needs and interventions more complex. A 2016 Pew Report captured these shifts: the share of Veterans under 50 in the U.S. population is expected to grow to more than 33 percent of all Veterans by the middle of the century, and estimated a shift from a majority of Vietnam-era Veterans to a majority of those who served in the Gulf War era.

With this in mind, our guiding question is how can we better support these caregivers, particularly through digital tools and services?

Diving into the Research and Next Steps.  Our team’s research began by talking with Veteran affinity groups, Veterans Service Organizations like Wounded Warrior Project and the American Red Cross, and caregiver communities.

We’re eager to explore a variety of topics: mobile access to health records, family planning tools, health literacy and training applications, and simplified financial support. While VA has been focusing on improving digital experiences for Veterans, caregivers also demand a focus. On behalf of Veterans like Jeff and caregivers like Paula, our team is eager to apply skills, energy, and empathy to address the challenges caregivers face.

Amelia Sampat, Brandon Lee, Dani Cinali, Matthew Spector, Kate Spies