A read of what's in store at the Consumer Electronics Show, CES 2013 this week in Las Vegas reveals a digital health revolution of astounding proportions. Take the super session with headliners Arianna Huffington and Deepak Chopra discussing devices that let us monitor everything from our stress levels to genetic sequences.
The "quantified self" health movement is all about giving the user control over personal health data generated by wearable sensors and the clinics, hospitals and labs where they receive care. The challenge and opportunity with the influx of data, especially sophisticated data, is that users need a way to make sense of it and interpret what it means. In fact, it helped me personally. At the Healthcare Information and Management Systems Society conference last year, I was inspired to get a Fitbit for activity and sleep pattern tracking. It revealed problems in my sleep patterns, which led to a sleep apnea diagnosis. My doctor said it was the key to early diagnosis, which could add years to my life.
Medical professionals are concerned about patients misinterpreting the data. But patients fed up with care that is expensive, unresponsive and uncoordinated find it empowering. It's especially true when research shows that few of doctors' decisions are based on evidence.
This "digital health revolution" offers great potential for technology to improve health care quality and even affordability, but only if consumers use the online information like they do on websites and apps like Amazon, Fandango and Open Table.
Obviously movie and restaurant apps and websites operate with significantly fewer sets of data that are much simpler. But the future of healthcare is a tsunami of data and information about not just individual patients, but about the performance track record of those providing care and even what it costs.
This kind of sunshine in a previously mysterious enterprise should lead to great insights and advances. There are at least five trends that show we're moving in a positive direction:
1) The new federal health law elevates performance measurement and transparency, providing funding to develop more measures of care and tying things like funding and accreditation to performance on those measures.
2) Research into the kind of information consumers want and how they want to see it will help shape apps and websites that will get used. While national ratings exist on hospital and nursing home performance, very few people use it. The Agency for Health care Research and Quality (AHRQ) and the Center for Medicare and Medicaid Services launched the Center for the Science of Public Reporting to better understand how to effectively engage consumers. AHRQ is also expanding and redesigning MONAHRQ® (My Own Network powered by AHRQ) -- a downloadable website builder tool developed to help organizations create their own health care performance reporting websites.
To ensure the redesigned MONAHRQ reaches more consumers with information they can use, the initiative will include the input of a committee of top experts in health care and public reporting. The key will be to retain the rigor and science that make measures valid and trustworthy, while presenting information in a format that means something and gets used.
3) The rise of knowledge hubs. Knowledge hubs are much more than a website. They put data and connections to work and facilitate feedback that drives greater knowledge and improvement. Consider the open-source infrastructure created by the National Cancer Institute capable of cross-referencing the relationships between 17,000 genes in five major cancers across 20 million journal article abstracts and the gene expression data of millions of simulated patients. The knowledge hub allows for collaboration that transcends time and place, bringing greater understanding of the pathways cancer-causing genes take and the effectiveness of the drugs that target them.
4) Mobile plus. It used to be that a website or app labeled "mobile" meant you could read it on your phone. The future of mobile health is synthesizing information to make it more relevant and actionable to medical professionals and patients alike. For example, an app that helps patients keep track of their medications not only notifies a family member if a dose is missed, it also helps pharmacies and drug makers identify areas of the country with high or low prescription rates.
5) Innovations in public reporting on health care performance. While we're a long way from the user-friendly yet fairly sophisticated ratings of cars, toasters and dishwashers, there are some models to learn from:
- Consumer Reports and Massachusetts Health Quality Partners joined forces to publish ratings of nearly 500 primary care physician groups in Massachusetts. Patients and their families can use the information to make more informed choices about where to get care. Doctors and their care teams can use the information to compare performance and identify areas for improvement.
- Nationally, the Society of Thoracic Surgeons (STS) and Consumer Reports published ratings for hundreds of surgical groups across the country that perform heart bypass surgery. The STS database contains more than 4 million patient records. The familiar 5-point Consumer Report scale is the product of 11 different performance measures and a formula to ensure comparability.
- Leap Frog, a health-quality nonprofit, issues a report giving hospitals a letter grade for patient safety. The grade is based on 26 different proven steps to prevent errors and infections.
- The Puget Sound Health Alliance Community Check Up in Washington state compares medical groups, clinics and hospitals.
Elected leaders have struggled for decades to improve the access to and effectiveness of health care while holding down costs. Whether it's personal data or doctor and hospital performance ratings, data can tell a powerful and highly useful story. The digital health revolution unleashing torrents of data may finally deliver the equitable, affordable and effective health care system we've been searching for.
Mark Tobias (@PanthTech) is president of Pantheon, which combines technology expertise and a deep knowledge of health care, education, and social impact markets to provide online technology solutions for nonprofits, associations, and government.
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