FedHealthIT VP Susan Sharer took an opportunity at the event to speak with a few key individuals to gather their insights and perspective: David J. Shulkin, Secretary, U.S. Department of Veterans Affairs (VA); Senator Elizabeth Dole, CEO and Founder, Elizabeth Dole Foundation; Meg Kabat, LCSW-C, CCM, National Director of the VA Caregiver Support Program; Dr. Lynda Davis, Chief Veterans Experience Officer, VA; and Joe Robinson, Senior Vice President, Health Systems Solutions, Philips North America.

At the Elizabeth Dole Foundation and U.S. Department of Veterans Affairs’ 2nd Annual National Convening: The Military Caregiver Journey, Government and industry came together to better understand the role of military caregivers – the 5.5 million family members, friends, and others who provide care to America’s wounded warriors. The event, held in Washington, DC in November, examined the caregiver’s path, the challenges they face, and the opportunities that exist to provide solutions to better support the caregiver and ultimately, the mission of caring for the Veteran. Former First Lady Laura Bush provided the keynote address, supported by dozens of other leaders from the VA, as well as non-profits and other Veteran service organizations. Over the course of the day, the insights they shared revealed a clearer vision for a way forward.

Military Caregiving and the Elizabeth Dole Foundation

Founded in 2012, the vision of the Elizabeth Dole Foundation is “an America where military caregivers are empowered, appreciated, and recognized for their service.”

The Foundation’s programs include identifying Dole Caregiver Fellows – selected from military and Veteran caregivers across the country – who serve two-year terms and play a lead role in raising awareness, advocating for military caregivers nationwide, and activating their communities to address caregivers’ challenges.

Other Foundation programs also include comprehensive research and ongoing discussion, and a focus on raising awareness and providing resources and support for military caregivers, also called Hidden Heroes.

Senator Elizabeth Dole’s initiative grew from the people she met when her husband and Veteran, Senator Bob Dole, was hospitalized for 11 months at Walter Reed National Military Medical Center. During that time, she interacted with fellow caregivers, heard their stories, saw their struggles and came to understand that these unpaid caregivers, who in paid roles would represent $14 billion annually, are the patient’s best opportunity for improvement. A two-year study, commissioned by the Foundation and undertaken by RAND, discovered this key support group experienced a higher rate of negative health consequences personally, and a range of challenges in their complex role. “RAND told us that this was a societal crisis that needed a comprehensive national response from across all sectors,” Senator Dole said.

She soon found that Americans as a whole had no idea of the complexity of the issue, but that across the board, everyone she asked was willing to help. The result has been a bipartisan effort and a national coalition that now encompasses more than 300 organizations.

The Journey Map

Dole says that “today’s assistance and resources have been created without the benefit of truly understanding the caregiver journey. This new approach represents an opportunity for meaningful change in how we support caregivers.”

Part of the way forward, she says, will be the creation of the Caregiver Journey Map which will help stakeholders better understand and quantify the physical, financial, social, and psychological impact of caregiving. The Map will also chart milestones and key intervention points, which will help refine the support needed and identify the best provider.

Secretary Shulkin says the real moonshot here is about optimal care and keeping Veterans safe. “It is about putting together remote monitoring, home based visit models, combining telehealth and Connected Care, supported by caregivers, supported by the ability to deliver medication and other resources to the home, focused on the critical role of the caregiver, and ultimately, the Veteran.”

According to Joe Robinson, Philips North America, the goal for Veteran care is care in the home, and in order to achieve it, there must be an understanding of the problem that comes from truly understanding the caregiver and patient journey. Deployment of an effective strategy, he says, will require intervention at the right place with the right program, technology, or care solution.

The Role of the VA

As the largest integrated Healthcare system in the U.S., the VA will play a crucial role in this movement in many ways, and Senator Elizabeth Dole says Secretary Shulkin’s commitment to a cultural change within the Agency is key. Part of that cultural change comes down to recognizing the role of the caregiver as an integrated part of the Healthcare team, understanding that they are frontline with the Veteran, and that they may see and understand the nuances of long-term health issues in a different and more insightful way. As part of driving this vision, the VA, under the direction of Secretary Shulkin, has formed a Veterans’ Family, Caregiver, and Survivor Advisory Committee. The committee, chaired by Senator Elizabeth Dole, will play a key role in gathering insights aimed at better understanding the community’s experiences.

The Committee
The role of the Veterans’ Family, Caregiver and Survivor Advisory Committee is to “advise the Secretary of Veterans Affairs, through the Chief Veterans Experience Officer, on matters related to Veterans’ families, caregivers, and survivors across all generations, relationships, and Veterans status; the use of VA care and benefits services by Veterans’ families, caregivers, and survivors, and possible expansion of such care and benefits services; Veterans’ family, caregiver, and survivor experiences, and VA policies, regulations, and administrative requirements related to the transition of Service members from the Department of Defense to enrollment in VA that impact Veterans’ families, caregivers, and survivors; and factors that influence access to, quality of, and accountability for services and benefits for Veterans’ families, caregivers, and survivors.”

The VA is also working to leverage its insights and experience beyond today and beyond its own walls. As a key training point for medical students, the VA has the potential to effectively influence the vision and understanding of the medical practitioners of the future. This will be key in ensuring seamless care for Veterans across the Healthcare sector and wherever they receive care. “Roughly 70 percent of U.S. medical students will rotate through VA at some point in their careers. Exposing these 122,000 students annually to team based approaches to care, demonstrating the social, economic, and psychological aspects of wellbeing, will be significant in the delivery of care moving forward,” said Shulkin.

Robinson says opportunities exist today, through the Elizabeth Dole Foundation, the VA Caregiver Support Office, and the Veterans Experience Office, to gather insights and a better understanding of the needs of the Veteran. “There are more than 22 million Veterans and more than nine million are served in the VA’s system. The opportunity to make a huge difference in such a large system is amazing.”

The Veteran Experience

Another VA initiative is the Veterans Experience Office (VEO), which represents and responds as the voice of the Veteran, caregiver, and survivor community, advising the Secretary and other senior leaders in VA to ensure the unique needs of Veterans and their families remain the ultimate focus of VA’s modernization efforts.

In her role with the Veterans Experience Office, Lynda Davis is charged with examining the role and function of the office to assess “how it can be both our North Star in terms of being best in breed in customer service, enabling Veterans to want to choose the VA, and helping us devise systems where, across the enterprise, we are building capacity to improve delivery.”

In a statement upon her appointment to the position, she spoke about the “state-of-the-art technology and innovative solutions” that would be required to “ensure Veterans are consistently provided a high-quality experience that earns their trust.”

Caregiver Support

It’s been almost 15 years since Meg Kabat began working with victims and families of catastrophic injuries, and since she first recognized the lack of infrastructure to support the families of these Veterans. This awareness spurred a research effort that identified some of the key issues and, by 2010, drove the expansion of a two-person office focused on aging issues into an expanded program of comprehensive assistance.

In her role with the Caregiver Support Program today, Meg Kabat helps deliver a complex program that includes financial support, peer support, and other services regular health insurance may not provide. “The system is complex because it was designed in statutes and the caregiver’s eligibility is based on the needs of the Veteran. If we think of conditions such as dementia for instance, where the diagnosis may not come until later in its evolution, but the caregiver has been coping with increasing symptoms for much longer, there isn’t always a direct relationship between the two.”

Through roughly 350 caregiver support coordinators at medical centers across the country, her team is focused on “the eyes and ears of the care team” – the caregiver. “We are focused on integrating caregiver sensitivity into VA medical centers, to ensuring the caregiver has a seat at the table, and to ensuring all staff embrace families and caregivers at all points of service on the VA side,” said Kabat.

Research is the Path to Results

Research is at the heart of the Elizabeth Dole Foundation’s efforts. Beyond the initial study, the Foundation also commissioned a second RAND study to identify a research blueprint that outlines 10 paths for future study and the services required for caregivers over the long-term, including a recommendation that the VA pick up on and become the center of excellence to drive research and to be the source of an organized plan.

Legislation is also key. The Military Veteran Caregiver Services Improvement Act of 2017, for instance, would expand services to caregivers of Veterans seriously injured or who became ill on active duty prior to September 11, 2001, to include child care, financial planning, and legal services.

Davis says analytics and measurement using real time surveys around service and the user experience along the way are key. “We are adapting and infusing modernization throughout the VA as a basic cultural change. Along the way we are always trying to access the experience of the Veteran and to hear that Veteran’s voice in the moments that matter throughout their journey – when they leave the military, during re-education and training, as they age, at end of life, memorialization, and then the experience of the family along the way, as caregivers and survivors.”

Kabat says her office is open to collaboration and solutions from partners. “We are focused on helping caregivers connect wherever the need is, be it training, education, or support programs. We also need to be able to demonstrate that supporting the caregiver is part of supporting the Veteran, that it ultimately helps support the mission of care.”

Advice for Federal Health IT Leaders

Dole’s advice is simple: Join the movement. “We’ve begun staging the Journey Map. The next part will be expanding and finalizing it, and then executing it with partners across the country, including industry partners who can take the Map, learn from it, and bring forward technologies and solutions.”

She says the effort will not be successful without partners who are able to provide alternative and non-traditional methods for intervention, who can devise ways to employ caregivers as part of the health team to drive the solution forward.

Davis says modernization, from acquisition, to contact centers and websites, to telehealth, provides multi-channel opportunities to connect with and serve Veterans. Consolidating services, making care more efficient without losing information, and maintaining the importance of a personal touch related to care will be key.

“The VA wants to be at the leading edge of technology and innovation, it wants Veterans to experience the best of what America can offer,” says Shulkin. “That means new types of strategic partnership, and hearing ideas even earlier than that. I encourage people to respond to RFPs, to suggest strategic partnerships, and to work with our Center for Compassionate Innovation to drive solutions.”

According to Robinson, the complexity of VA and DoD requires partners to truly commit to understanding the problem and the nuances of the Agencies. “I see a lot of people who try to engage in bits and pieces, but few who actually commit to long-term sustained engagement.”

He says Philips has remained strong in its commitment to VA and the result has been multiple invitations to the table to solve problems. “Achieving this moonshot of care in the home is complex, but it solves a big problem. These kinds of solutions don’t happen quickly or easily but they can happen through collaboration. We are constantly talking with partners and potential partners about how we can leverage capabilities and solutions, and how we can scale those solutions because that is where we will really have an opportunity to change care.”

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