2016 Connected Health Trends: Patient Data Ownership

In our next 2016 Connected Health trend we find ourselves with the call from patient advocates around the land: increased ownership of data by the patient.

The healthcare industry is the guardian of, in my opinion, the world’s most important data. With that being true, the patient data guardianship story is about to get even more interesting. This is because, in the coming year, we will see how shifts in power dynamics and healthcare consumer trends are making way for the increased ownership of data by patients.

Industry Shifts Cause Shifts in Power Dynamic

In the wake of Meaningful Use, we understand that, in theory, patients have a right to obtain their data. However, a few shifts in the marketplace, including some movements within the legal and regulatory world, are making it more and more clear that patients should have more access and ownership over their healthcare data.

At the core of this trend you find the Affordable Care Act, which, as it has taken root, caused a shift in power dynamics throughout the industry. Under old paradigms of care, the “power players” were the healthcare providers and health plans and, as such, the power players held much sway over the data. However, ACA is leading to some industry disruption, and healthcare consumers are emerging as power players in their own right.

Healthcare providers know that they need to engage healthcare consumers to motivate and incentivize them to manage their wellness instead of their sickness. Health plans know they need to motivate and incentivize cost savings behaviors. There are a lot of quality metrics and dollars at stake if the patient does not respond to the call, and this is what, in essence, is shifting the dynamic. In order to answer the call, the healthcare consumer is going to have increasing expectations for their relationship with their healthcare providers and health plans, and this brings with it expectations for increased ownership over their data.

How to Respond to this Shift

We are beginning to see this call for data in action. At the start of this year, HHS issued new guidelines due to a significant number of complaints received from healthcare consumers that were frustrated throughout the process of exercising their right to see their records. These guidelines stated that providers cannot require patients to state a reason for needing their records and they cannot deny access out of general concern that patients might be upset by the information.

However, there are more proactive ways to respond that will leave your patient population with the information they need to manage their wellness. At the foundation of answering the call of this trend we find the patient digital experience ripe with consumer-focused health management tools, products, and services. Fortunately, we can glean some interesting insights from a mobile health study designed by New York University and published in the Journal of Medical Internet Research last year. This study included more than 1,600 mobile phone users, assessing across sociodemographic characteristics, health app use history, reasons for use of health apps, and the status of their overall health. The study found that while mobile health app usage was extensive across the population, there are a vast number of people not engaging with those applications. What was the reason for the decrease in engagement? These apps were not meeting the healthcare consumers needs. What are they looking for? They were looking for their own data. The study found that these healthcare consumers wanted:

• Improved Communication with Providers: 57% of respondents were interested in apps capable of making an appointment or directly connecting to physicians. More than 60% wanted an app to access their medical records.
• Better Health Management Tools: Going beyond the “full access to my health records” study participants asked for tools that would help them “jot down symptoms that are ailing me….so I could send them to my doctor” and “graphs showing my health as time passes”.

I was chatting with my colleague Michael Porter about this study. Relating the desires of the healthcare consumer to Perficient’s experiences creating patient portals for Kaiser Permanente and Hospital Corporation of America, he saw the opportunity but also the “difficult but not insurmountable” challenges inherent to this trend. Here are some to keep in mind:

1. Make an appointment with my doctor: Doctors use a myriad of systems. Even clinics owned by the hospital use different scheduling systems than acute care hospital settings. This makes creating a digital means for appointment creation a challenge. While there are a number of 3rd party entrants trying to solve this problem, it remains a “beautiful but challenging Shangri-La”. While healthcare providers continue to work to make their data systems achieve such an end, many are succeeding in creating interim patient journeys that tie a digital “Make an Appointment” form with call center processes that are already in place.
2. Look at my health over time: The challenge here is that the underlying data is not currently captured in such a way as to create these views.   In our current state we often expect our patients to be our manual ETL for their data across systems.  While such a call is not impossible, the solution demands a rather robust data warehouse or big data lake and any given system will have to merge both records from the hospital and from the clinics.

With these data challenges in mind, it is actually pretty interesting to see the advantages that the unsuspecting health plans have in meeting these consumer data demands. As a central point of access, health plans are the owners of the most complete patient data story. As health plans become increasingly consumer centric, it is likely that health plans will be able the ones more apt to create such data centric solutions.

Increased Ownership of Data by Patients is just one of the trends we explore in our new guide, The Definitive Guide to Connected Health 2016: 10 Trends You Need to Know. Download the guide to see where this trend falls and to discover the other  Connected Health trends healthcare executives must be aware of. In the guide we also provide insights to help organizations not only survive – but thrive – in the age of consumer-driven healthcare.