What does The 21st Cures Act Mean for Patients and Their Families?

Jean Ross, RN
Nov 26, 2020 · 6 min read

Mark 2020 as the year that forever changed how we work and how we will interact with our health data. Individuals and families need to realize they are now the ones being put at the center of owning and sharing their health data.

As of November 2, 2020, you may be getting your lab results the same time as your doctor thanks to a lot of hard work of health systems, individuals, patient advocacy groups, payors, and government agencies who believe patients deserve better access to their health information. The 21st Century Cures Act coming out of the Office of the National Coordinator for Health Information Technology (ONC) has a three-year rollout plan already taking effect that will revolutionize your health data. So, what does this all mean for you and your family?

What Is the Intent of the 21st Century Cures Act?

The 21st Century Cures Act is ONC’s recognition of the rapid acceleration of health information technology surrounding patients, and the desire to empower patients by giving them better access to their health information. Prior to 2020, your lab results went to the ordering provider to review before releasing to you. With the Cures Act, now your labs are released to both you and the ordering provider at the same time. When we live in an era where there are 24 board certified specialities of medicine, growing numbers of advanced practice providers and one of the largest 65 and older population cohorts in history, the Cures Act recognizes there are seismic shifts happening around how, who, and where care is delivered that impact patients. ONC believes by putting the patient at the center of their own health data this will drive innovation and transparency.

“Congress passed the Cures Act with the intent that we can start to unravel the opaque schemes that are so common in American health care today”

- Empowering Patients with Their Health Record in a Modern Health IT Economy

The health system has been on overtime trying to figure out how to better coordinate patient care. The days of a single provider who could provide continuous care for you through the entire health system are no longer. Now more than ever we need a way to hang the health information on the most common traveling point in the health system, the patient. By placing the patient at the center, the Cures Act is changing a long held mindset that the provider and health system own and know best what to do with your health information.

HealthIT.gov “Your Health Information, Your Rights

How did we arrive at the need for the Cures Act?

The 21st Century Cures Act is revolutionizing the idea that health information belongs to patients to manage in their own secure applications and smart devices. By bringing to the table providers, policymakers and Health IT Developers through the Cures Act, ONC is establishing the way we will talk, certify, and expect information to flow in healthcare now and forever. ONC is also establishing a process to report information blocking when a patient or provider feels another entity is blocking needed access, exchange, or use of electronic health information (EHI). The arrival of such a milestone act by a federal entity has been in the making for a longtime.

Remember the days when you could peek behind the medical office receptionist and see the rows and rows of medical charts?

The HITECH Act of 2009 was the catalyst to shifting away from paper based records to electronic medical records.

What caused the shift of paper to electronic was the Health Information Technology for Economic and Clinical Health (HITECH) Act signed into law on February 17, 2009. At the same time, the Office of the National Coordinator for Health Information Technology (ONC) was legislatively mandated and charged with how the electronic exchange of healthcare data could deliver better care. Much of the energy that occurred shortly after 2009 focused on adoption of electronic health records (EHRs) and electronic medical records (EMRs), where health data could be digitally stored. These electronic records replaced the rows of colorful charts in offices and millions of binders next to hospital beds nationwide.

As of 2017, 86% of US medical offices are using an EMR/EHR system and 97% of US hospitals are using an EHR. The assumption with such adoption of electronic records was health data would be easier to share, but the growing frustration among providers, payers and patients speaks to why ONC brought numerous stakeholders together to figure out what is happening. In addition to placing the patient at the center of their own health data, the Cures Act also defined what is and what is not information blocking. By attaching monetary penalty to those who may be intentionally blocking health information starting April 5, 2021, the ONC is establishing what is a priority for the health system to adopt quickly.

What Does All of this Mean for Me and My Family?

What makes the 21st Century Cures Act such a turning point is now patients will be formally recognized in their role as keeper of health data as they are given easier access to their records. To really fully understand this shift, pretend the Cures Act applied in the days of paper charts. Imagine checking out at the doctor’s office and the receptionist handing you or your child’s color coded file folder from behind their desk. If the office refused, you would be filing a complaint to the ONC . Realizing these changes are happening today with even more coming over the next three to five years from the ONC, now is the time to begin your own shift in thinking about how you need to own your and your family’s health data.

This idea of taking ownership of our health data may seem overwhelming to some. Running a small business helping families coordinate medical care for older adults, the number one statement I hear over and over from these frustrated family members, “Who is the quarterback in my parent’s care?” My answer to them was, “You. You are the one responsible.” That is a hard statement to swallow along with all the other things you find on your plate with an 88-year old dad diagnosed with Alzheimer’s. This statement did not mean their providers were any less amazing, but these families were already feeling the time constraints and poor outcomes from lack of coordination and sharing of health data.

For my little family, I sat down to calculate we interact with nine different health related entities with each family member requiring their own separate record at each. When I counted, I realized there were 25 different portals or accounts for my spouse, three sons and myself where various pieces of our health data reside. While I am very excited about what the Cures Act does in accessing our health information and what potential there is for better coordinated care, I am very familiar with how overwhelming keeping track and maintaining records is for families. I am even more driven to build a product that will help our family and many others to better engage, organize, access and share their secure health data to take advantage of this change.

Jean teamed up with her neighbor and software product expert, Jim McIntosh, to tackle the problems felt by families today. We believe there are needs not being met by the large health care networks and the systems they offer families to use. We are in the process of developing an application that combines health and appointment history to better search and connect. And, we’d like your input.

Our Ask. If you can relate to the ideas we speak in our article, then there is a good chance we would love to talk or hear your experience. Please consider taking our 15- question survey or schedule a virtual 30-minute interview with Jim and Jean. Thank you!

Primary Record

Own your health history.

Medium is an open platform where 170 million readers come to find insightful and dynamic thinking. Here, expert and undiscovered voices alike dive into the heart of any topic and bring new ideas to the surface. Learn more

Follow the writers, publications, and topics that matter to you, and you’ll see them on your homepage and in your inbox. Explore

If you have a story to tell, knowledge to share, or a perspective to offer — welcome home. It’s easy and free to post your thinking on any topic. Write on Medium

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store