Unleashing the potential power of health data
It’s a dark wet night, a car hydroplanes and skids out of control and slams into a tree. 911 is contacted via OnStar and emergency assistance is sent to the scene of the accident. Both the driver and passenger are severely injured and are not able to verbally respond or communicate with the firefighters and EMTs. They are transported to the closest hospital to the scene, which is near to where they were vacationing but 100s of miles away from their home.
The Emergency Room team is literally blind; even though they know the names of the victims and where they are from, they have no other information regarding their health, allergies, previous medical history, etc.. Yet, decisions need to be made regarding the best treatment to ensure that these accident victims not only survive, but that they can live full, happy lives following this horrendous event.
The scary part of this scenario is that it happens every day… in 2012. It’s unbelievable with the advances and movement of data for everything from credit card purchases, to downloading of mobile applications to live streaming of movies via NetFlix, that digital health data would not be available to the ER team, but it typically is not. It isn’t like people haven’t realized the value and potential use of health data.
In 1996, Congress passed the Healthcare Information Portability and Accountability Act (HIPAA). The goal of this Act was to make healthcare data ‘portable’ in a safe and secure way to improve the way that healthcare institutions operated, therefore directly impacting patient outcomes. Unfortunately, many people got hung up on the “Accountability” part, so there is a great amount of time and money focused on controlling the data but not using or moving the data to realize the benefits of its existence in a digital format.
In the mid-2000s, the tapping of existing standards like Health Level 7 (HL7) and coding frameworks like International Coding of Diseases (ICD) spawned incremental advancements towards digitalizing health data and moving it. Hospital and insurance companies started to realize the use of the data when it was in its electronic form. Then, the creation of incentive programs, like Bridges to Excellence, encouraged health systems to build quality into their care model and by increasing relative reimbursement rates if/when specific patient outcome oriented quality measurements were achieved.
But it was not until 2009, as a major infusion towards progress, Congress passed the Health Information Technology for Economic and Clinical Health Act (HITECH) to increase the incentives, investments, utilization of electronic health records (EHRs) and ePrescribing and to build a robust highway for the health data to travel on between healthcare institutions. These highways are better known as healthcare information exchanges (HIEs). Pockets exist where health data is being collected and moved to connect healthcare institutions and improve care and outcomes for the patient, but they are just pockets. The US and the world still have a long journey to make health data ubiquitous and useful in the type of scenario that was outlined at the beginning of this post.
The good news is that things ARE happening beyond the institution of federal policies and we may actually be at the proverbial ‘tipping point’. Clinicians, healthcare service providers, entrepreneurs, and technologists are figuring out real ways to unleash the potential power of health data. The following examples not only exemplify the opportunities to use health data and drive for efficiencies, but most importantly improve interactions with patients and ultimately individual patient outcomes:
Motion sensors to mobile technologies –
- Leveraging Microsoft Kinnect to visualize and navigate PET images for surgeons to use real time during surgeries
- Installing and using motion and GPS based applications on phones to unobtrusively track and monitor early stage Alzheimer’s patients
Telecom to satellite infrastructures –
- Using improved telecom wiring to connect hospital networks and establish HIEs and allowing the movement of large and dense image data from all of the different points of care that is used by a patient
- Tapping tools like Skype to give patients in rural and remote locations access to clinicians and specialists from across the globe
Social media –
- Patient: Using FaceBook or networks such as Patients Like Me to connect, engage, and learn from other patients that have the same disease or condition
- Clinicians and researcher: Tapping patient generated data sets in existing social media like FaceBook, Twitter, etc. to better understand disease etiology allowing for the development of customized products and treatments that recognize a specific patient’s real life challenges to becoming and staying well