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Patient Ownership of Medical Information: Meeting the Challenge of Expectations and Delivery

There are a record number of consumers tracking and monitoring health and fitness through apps, wearable devices, and online portals. According to a recent Pew Internet study, 7 in 10 US adults have tracked a health indicator for themselves or for someone else. Of those, 34% share their health tracking records or notes with another person or group.1 However, consumers’ growing affinity to collect this type of data is just the first promising step in engaging with health information on a larger scale, such as having access to and owning their full personal health records.  It will ultimately be up to each individual patient to determine how much they leverage this unprecedented access, their level of personal management and involvement, and how it will impact their health outcomes.

With infrastructure and interoperability slowly improving and mandated legislation forcing online access to health records, there are many questions still being raised around patients accessing their health records.

With different individual health needs and the varying proclivity towards motivation and adoption of monitoring health online among patients, how will patients perceive and extract value?
The ability for a patient to view their overall health as a total and holistic view can be a daunting experience, as well as a potential wake-up call. A recent study was published in which a set of patients from the VA had full access to their health records for a period of time. Results showed that those who were active in viewing their health information increased communication with their doctors, participated more directly in managing their overall care (better follow up on tests and more likely to decide to when to seek care), and most importantlyaccess to the records improved their sense of understanding and control over their health issues.  There were also those that thought seeing undisclosed health information, poor organization of records, and inconsistencies of doctor notes as overwhelming and concerning, but did think that viewing more of their health information, as opposed to only accessing or knowing small parts, still provided benefits.2

Owning and accessing health information helps patients sort through information at their speed and allows them to actively choose their level of involvement. Beyond just reviewing their own records, the ability to view personal notes, next steps, lab results, patient education materials and many other items before they leave the doctor’s office can reduce the stress and improve the likelihood of taking necessary actions to managing their health needs.

How will technology developers implement independent solutions that ultimately need to fit into a larger ecosystem to create a unified and compiled health record?
Two of the big challenges with making personal health records and EMR useful for both patients and healthcare professionals in general are interoperability issues: 1) how to easily collect and combine large disparaging data sets, and then 2) how to parse, sort, and extract data and information in a useful way that makes it easy to understand and take action on.  Technology developers for the healthcare space say it is imperative that knowing standards and direction regarding types of health information that can be shared, the format, and how it’s transported is essential to their ability to deliver usable and helpful solutions.

What this means for patients is that better health outcomes don’t happen just by making more information available.  Developers are working on finding ways to:

  • Display information and data in a way that can be easily understood, manipulated, and clearly provides the patient with the information they are looking for in a user-friendly way.
  • Integrate content and information only where it is appropriate and contextually relevant to ensure that patients get the right information at the right time to maximize its impact and reduce the potential clutter.
  • Focus on very specific solutions that address and help solve or support a range of potential patient needs.

As guidance and acceptance around standardizations becomes more solidified, it will exponentially increase the rate at which patients can truly utilize their personal health records.  Programs such as the “Automate Blue Button Initiative,” a technical blueprint for data holders and receivers alike to share information in a standardized format,  will continue to facilitate each patient’s ability to compile, access, and maneuver through online health records.3

What does it mean for doctors when patients are involved and informed based on a full and holistic view of the health through online portals?
Some physicians embrace the intended outcomes of letting a patient access their full medical records.  Others think that it will create more work in an already overly packed day and could even create a potential challenge to the decisions and direction they make for patients, as well as increase costs and add more time to manage the patient record.  But if the outcome of a patient owning and accessing medical records is even a little improvement in their health (or their family’s health), then the benefit is obvious.  Some results are showing the potential for benefits for physicians as well, as patients that engage with their health records show:

  • Improved recall of appointments—leading to more business, less loss of opportunity, and possible increased adherence
  • More prepared for encounters with providers—making a more efficient office visit
  • Greater collaborative care—greater shared intelligence amongst a patient’s team of physicians
  • Improved sense of control of health issues—engaged patients that listen and work with their doctor

While it is too early to really see the true impact on overall clinic workload, it will most likely create the need for physicians to work differently, pushing for a new foundation of skills around patient communication and teamwork.

Where are the opportunities to integrate into the ecosystem to benefit pharma, patients and providers in a way that enhances the experience and the benefits?
Online health records and EMR platforms are currently being explored as a new way to successfully reach both patients and physicians with relevant information in a timely and relevant way.  Supporting prescribed decisions is critical for pharma, but must be done in such a way that the experience focuses on the impact around condition management, as well as the options for patient support, as opposed to intrusive advertisements and overcrowded promotional interference. For patients, the primary objective would be to better target patients with information in a way that does not impose on their personal privacy.

In our recent white paper, Healthy Expectations, this was addressed, identifying the needs for unique ways for patients to share and integrate their data with tools they are already using.  Enabling patients to take more ownership of their health data can be even more impactful for conditions that have the need for more engaged patient symptom and disease management tracking. Marketers can use access to condition populations to better map their patients’ data flow and look for opportunities to help curate or integrate along the flow.  Even integration with the default mobile calendar apps can help to provide a tool patients are comfortable with that has a shared data function.

Conclusion
We are living in an increasingly digital age when it comes to healthcare, where consumers are comfortable with performing and monitoring all their finances online, yet barely scratch the surface when it comes to their health records, even if to simply make sure their information is correct and accurate.  While some of this reluctance is due to patient behaviors and preference, a majority of the resistance stems from poor user experience and lack of effort on the part of healthcare providers. However, if patient expectations can be met online, empowering patients to easily access to their own health information electronically, then the door will be open for dramatically changing the way in which all aspects of health care is discussed, practiced, and administered.

 

  1. http://www.pewinternet.org/Commentary/2011/November/Pew-Internet-Health.aspx
  2. Woods SS, Schwartz E, Tuepker A, et al. Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study. J Med Internet Res. 2013; 15(3): e65.
  3. http://www.healthit.gov/patients-families/pledge-info
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Clint Tankersley

Clint Tankersley

Director of Commercial Strategy & Innovation at Cadient Group
As Director of Commercial Strategy and Innovation, Clint Tankersley works hand in hand with clients to develop and integrate innovative solutions applying emerging technology along with current and new digital trends to enhance the brand experience. Prior to joining Cadient Group, Clint spent six years at WebMD, where he was most recently the Director of Product Development in their Innovation Group focusing on Health Information Technology (HIT) industry trends, government programs and mobile health (mHealth) solutions to identify potential strategic partnerships and product integration. In addition to this most recent role, he had also managed commercial platforms and products for Medscape, as part of WebMD, with a specific focus on marketing and engaging healthcare professionals, working directly with many of the top pharmaceutical companies and brands. Outside of WebMD, Clint worked as a consultant to develop and launch a disease management app that supports Alzheimer’s patients and caregivers. Clint graduated from Drew University with a Bachelor’s degree in Biology and received his M.B.A from Babson College.

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