Social media platforms like Instagram, Twitter and the like are easy to learn and make it easy to share information with just a click of a mouse or your smartphone. Is it too far-off to consider that someday that it will be just as easy to access, manage and share our medical records and diagnostic history with our healthcare providers?
After all, consumers are more informed and active than ever in terms of monitoring and tracking their fitness, diet and healthcare. IDC’s Worldwide Quarterly Wearable Device Tracker noted that companies shipped 24.7 million wearable devices such as Fitbits and Apple Watches in the first quarter of 2017 alone.
If we are truly the stewards of our own medical data, what’s to stop us sharing our medical history and diagnostic information with our primary care physician or medical team via tools like Instagram, just as easily as you currently share your selfies from summer vacation?
Okay, sure, when it comes to actually Instagramming private medical records, there are inevitable implications around HIPAA and other privacy considerations, but as people continue to take an active role in their healthcare, the demand for resources that help us – and our medical teams – make informed decisions about our care is on the rise.
Indeed, this movement has far-reaching benefits for patients, their caregivers and their healthcare providers. Managing one’s own healthcare data and records is key for all consumers and patients. But the stakes are infinitely higher for those facing a diagnosis of cancer, Alzheimer’s or chronic conditions.
If you’re a patient that’s been recently diagnosed with lung cancer (for example), your biggest priorities are likely to be around educating yourself about the type of cancer you have, what stage it’s at, your life expectancy, who the team is that will develop a roadmap for your care, and what the impact of that roadmap will be. You might have a primary care physician that will begin to coordinate with a team of specialists. Your treatment plan might include surgery, or radiation treatment, or chemotherapy or immunotherapy.
It would be near impossible for even the most informed patient to share their medical history and records across those multiple specialists involved with their diagnosis and treatment plan. For diseases like cancer, and other high-profile, high-impact diseases, a precision medicine exchange is necessary that’s centered around the patient. This type of information hub – whether in the form of a 3-ring binder or a USB hard drive or a cloud-based secure portal – needs to be accessible not only to the patient (who owns the data), but to everyone on the patient’s treatment team.
The good news is that the ability to access, manage and share your medical records and diagnostic histories is significantly easier than it was just five years ago. In many cases, a consumer-friendly approach has given patients the ability to not just request and manage their own medical data, but to investigate and propose treatment plans and clinical trials to their medical teams.
Today, resources and innovative technologies are enabling patients to take that role a step further and shift from being a participant to an active marketer and advocate for new treatments. Being able to actively market yourself for new therapies and treatments is the next step in patient engagement.
For example, the Yale School of Medicine launched a user-friendly health information technology platform called Hugo in 2016, which allows people to acquire their health-related data and use it to participate in studies. Hugo lets people access their electronic health records (EHRs) from disparate health care systems and synchronize them with a research database.
In the press release announcing Hugo, Rick Kuntz, MD, MS, Chief Scientific, Clinical and Regulatory Officer of Medtronic noted that “there is a pressing need for new technologies that promote patient engagement and enhance data quality while reducing the cost and burden of data acquisition.”
Additionally, online communities such as DNA.Land a free service run by geneticists from Columbia University and the New York Genome Center, allow members to learn more about their genome, which in turn enables scientists to make new genetic discoveries for the greater population. By contributing their genomes to the site, DNA.Land’s members help to enable non-profit researchers and advance basic and translational science. Getting onboarded to DNA.Land is easy – you just create an account and they point you to a service such as Ancestry or 23andMe as your source for the raw DNA data.
Employers are also making it easier for employees to maintain data about their health. Dell was the first employer in the world to sponsor an electronic and automatically updated Personal Health Record (PHR) program called HealthLink. Over 30% of our employees interact with a PHR on a regular basis. A chapter I co-authored about the program and technology was published in in the book Analytics in Healthcare and the Life Sciences, which stated that the need for patient-centric resources is clear:
Consumers are being empowered with information and choice. There’s no fighting the trend, so employers – indeed, all the players in the healthcare ecosystem – must embrace it.
Whether it will be through a familiar platform like Instagram, or an information hub of the future that will allow consumers to easily share what they want, when they want, to whomever they choose, about their medical and diagnostic history, how we access, manage and share our healthcare data changing day-by-day. For consumers like me who are passionate about researching and accessing information about my own health and medical history, these are exciting times indeed. I look forward to learning more about my healthcare-self everyday.
