Q&A with The Carolinas Center

Can you give me a brief overview of Mind My Heath and how it came about?

In 2015, we at The Carolinas Center for Hospice and End of Life Care (TCC) identified a significant gap for timely accessibility of advance care plans when needed by family members and health care providers. Our focus was to enable a person to have advance care planning (ACP) documents available online, and to then provide them at the point of care, wherever and whenever needed. We believed that by leveraging technology we could highlight the natural desire for people to understand and be engaged with their health decisions. Then, it was a matter of creating a critical communications link to health care teams charged with making decisions about medical treatment, even if someone couldn’t speak for themselves.

What are the goals and the vision of this effort?

We want all adults to engage with their health earlier, more intently, and with greater information. Today, fewer than 30% of Americans have initiated documents about their wishes for care in advance.

We believe that when people own their own health and ‘plan for care in advance,’ our coined phrase to encourage engagement, that they are more likely to receive the care they actually desire. We want to make it simple for people to communicate their desires proactively to their family and friends, well in advance of any medical crisis.

We also believe it should be easy for people to update their legal directives when their circumstances change. An online portal that holds these documents and encourages communication will make this possible, especially if it communicates directly with the electronic health record (EHR).

You mentioned ‘plan for care in advance.’ Can you elaborate on this concept?

‘Plan for care in advance’ is our way of saying that none of us know when the unthinkable can happen – a car accident, a sudden medical event, or a life-limiting chronic disease. If something should happen suddenly, would our family members and legal decision-makers know what to do and what we want from our medical providers? We believe most people want to own those decisions and not require loved ones to guess what we might want done.

If I am a resident of North or South Carolina, what should I be doing today, and in the future, to ensure my wishes are known to my family and healthcare providers?

Regardless of where you reside, you must be willing to truly think about your health as an owner. The team you develop – family, friends, caregivers, health providers – to help you manage your own care is a critical piece, and enables you, and them, to make the decisions about your future with insight and understanding. As an owner, you can think about what you need to have in place should you not be able to speak for yourself. You can make decisions in advance about what you would want in an emergency. You can prepare documents that state your wishes and designate decision makers. You can share those decisions with the people who will be involved in decision making for you, including those who love and care about you.

Our project, funded by a $1.1 million Duke Endowment grant, is intended to provide a critical tool to help individuals make and communicate their best choices for care in advance. This is no cost to residents, and will enable people to have confidence that they are informing those that need to know about their wishes, and these wishes will be communicated when and where they are needed.

We expect Mind My Health to be operating in a number of NC and SC locations by 2019. We have partnered with Vynca, who will electronically share the Advance Directives developed by individuals to health systems’ EHR, enabling providers to know people’s desires for care in advance.