Why is defining family important?
For some, stepping in to help another family member or friend with their health has unanticipated challenges due to privacy laws that healthcare organizations must comply. When Primary Record began to tackle how to simplify health information for families, 100s of interviews led us to conclude:
Families are complex.
And the barriers around health information make it increasingly difficult to allow friends, family, and community-based professionals to help others who may need a village.
The original design of Primary Record assumed families were like an organization or a business. There was a hierarchical structure with roles and clear tasks assigned. However, families do not create such structure or culture when a member experiences trauma or receives a life-altering diagnosis.
Families build a team of support to create shared understanding, define a plan, find resources, and make decisions. Primary Record was built with an understanding “family” is much more than next of kin, but a curated team of skills and talents that need the flexibility to define their shifting roles and needs.
Seven Ways Families Can Define Themselves in Primary Record
Below are seven unique structures Primary Record uncovered when talking directly to families and their frustrations with getting the health information they need to help each other.
Divorced Families
While the overall divorce rate in the United States is on a ten-year decline, the divorced family dynamics are still a makeup of many families. It presents a unique set of challenges when taking care of the health and well-being of each other. The talk Brene Brown gave in 2015 at UCLA’s Royce Hall shines a light on how a family can grow in terms of not just children but grandparents when Brene’s daughter indicated to her mom:
Well, you know, not all my friends have eight grandparents.
Even without eight grandparents, there is a handoff and constant transition of children between households that require divorced families to create a shared system or delegate tasks related to medical appointments, illness, conditions, medications, and resources. Primary Record supports sharing these tasks between biological parents and step-parents by allowing the family administrator to invite other trusted adults with edit and view access to the medical profiles created for the children in their care.
Creating a searchable record around health information gives confidence that any child’s guardian can answer questions and keep the child’s health on track. The other key feature of Primary Record designed by families is how notes are created. Allowing families to create notes around the health information helps families fill in the gaps of health data from patient portals with their decisions and questions.
Single Parent
The image of a family can often assume two parents, but for 23% of children in the United States, a single parent is in charge of their health. A worry of any single parent who supports the health of their child(ren) is what happens if something happens to them.
Primary Record understands the need to create a team around their household. A single parent can add and remove neighbors, friends, siblings, and grandparents who support their child(ren)’s health and serve as a backup for medical appointments, giving medications, or monitoring conditions. If the worst happens, the parent is reassured the whole health story of their child is accessible to those they trust, and care can continue.
Families with Children Transitioning to College
About 15 to 18 million young adults transition back to college every fall. With the Affordable Care Act, the option of staying on a parent’s insurance plan until 26 years old provides a lot of young adults access to healthcare services. However, what is not always easy for families and young adults is how that insurance coverage follows them and the needed health information to access doctors and medications while on their college campus or away from home. An Instagram post by Shelley Western is an entertaining portrayal of an adult child calling on their mom to help them complete a new patient form.
Primary Record recognizes the many households where a family administrator may support a transitioning young adult and the need to teach how to complete medical history forms or take care of their chronic or rare condition. As a child transitions into adulthood, the family administrator can transfer the administrator role to their child but be invited as an editor or viewer to continue the support so many families provide today.
Adult Guardianship and Foster Parents
For about 1.3 million adults, the National Center for State Courts (NCSC) estimates state courts oversee at least $50 billion of assets under adult guardianship and conservatorships nationally. A guardian or conservator often is appointed to manage and coordinate how these assets are spent on community living and medical care. Stefanie Sinks is one example of someone who helps the court system support vulnerable aging adults. In her geriatric care management practice, she guides other families with aging parents. Stepping into cases of vulnerable or abused adults, she must quickly gather and organize a lot of information to help advocate and create the best plan for her guardians and clients.
In addition to guardians of aging adults like Stefanie, 208,000 licensed foster care homes also experience jumping into a situation where they must care for children with little knowledge of their medical conditions, medications, or last checkup.
Primary Record recognizes the social safety nets in communities. These temporary families deserve the flexibility, like any other family, to define those in their care and the ability to access necessary health information to support children and older adults. As well, Primary Record allows a family administrator to transition the role so that an individual’s medical profile can always follow them, no matter the guardian of their health.
Solo Agers
As the number of aging adults increases in the community, so does the number identifying as “solo agers.” Per AARP, a solo ager chooses never to marry or have children. Many rely on siblings, nieces, nephews, or friends in times of need or crisis. They build a family that is not always recognized by healthcare as “next of kin.” Primary Record recognizes solo agers increasingly worry about their future and how their curated family can access and help them with their long-term care needs.
A big part of coordinating those needs revolves around understanding the medical history and current doctors, medications, and conditions. The flexibility a solo ager needs in defining their family is found at Primary Record, where they can begin to centralize their health story in one place, then invite their chosen support to view or edit their health information to help them through transitions and care.
Same-Sex Marriage
The changing laws over these past years around same-sex marriage have caused a roller coaster of emotions in the 980,000+ same-sex couple households in the United States. The fear of not having access to health information to support a family member or being denied as a family member is something no one should face.
At Primary Record, inviting a same-sex spouse is how you begin to define your family. Individuals can create an account and begin their medical profile, where they securely connect to the health information systems via patient portals. Then, inviting a trusted spouse, no matter their sex or gender, allows same-sex couples to search and add to their spouse’s health story so the health information is always available in moments it’s needed.
Immigrants, Travelers, & Military Families
Not every family originates or stays in the United States. This is true of:
- 87.7 million individuals who identify as part of an immigrant family
- 3 to 8 million United States citizens travel abroad each year
- nearly 5 million individuals a part of a military family
- 8-9 million Americans (excluding military) living abroad
While immigrant, traveling, and military families share in the above unique ways they define their family, traveling across countries presents additional challenges in maintaining the health story for each other and accessing patient portals when overseas.
Primary Record’s ability to have a central place to connect family and share in the responsibility of maintaining this story to share helps no matter the place of living because Primary Record travels with these families.
Summary
Primary Record, a mobile application that simplifies health information for families, was designed with flexibility in how families define themselves. When it comes to healthcare, family is more than next of kin. Family means a curated team of skills and talents individuals build to support their health and the health of those they care for in the community. In talking to 100s of families, Primary Record has identified seven unique ways families define themselves. By creating a medical homebase for families, Primary Record instills confidence in any family to support one another at any moment of emergency or routine visit.
