Building a Learning Healthcare System for Cancer Research and Care

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I can go to the Treasury Department?s website and find out with certainty what the national debt is to the penny, today. I can go to any ATM, withdraw money from my own account, and get an immediate balance. And with a few touches on an iPhone, I can identify my exact location anywhere in the States, search for restaurants within a half-mile radius, have a meal, and submit my review of the restaurant afterwards. All of this is enabled through information technology and it has played a dramatic role in changing our society.

Unfortunately, our current healthcare system is incapable of comprehensively performing anything like this. Barriers in electronic exchange inhibit our ability to collect information broadly, learn from that information, and change how we conduct research and practice medicine.

I cannot search and find out how many Americans have been diagnosed with cancer this year (in fact, the most recent information is from 2006!). I cannot seamlessly transfer my medical records from one doctor to another, regardless of where I am in the US. And, if diagnosed with a disease, I cannot search for doctors and hospitals within a 200 mile radius that have seen this disease, profile my disease and individual preferences for treatment options, view and compare different hospitals? success rates in treating it, or acquire views of patients on their care experiences with this disease at those hospitals.

For a truly patient-centric healthcare system to occur, all of this needs to change.

Last week, the Journal of Clinical Oncology published a paper entitled Rapid-Learning System for Cancer Care which lays out a blueprint for transforming this infrastructure. The Learning Healthcare System is a concept which proposes to use information technology to build new medical knowledge as a natural outcome of patient care. Electronic medical records could cue a doctor that a patient matches for a new drug in clinical trials and direct that patient to a center using the drug. Similarly, patients could report outcomes or health issues from a treatment alerting their doctors in real time that there may be medical concerns to address. And spikes in disease occurrences could immediately alert health departments that there may be a public health issue. In this system, we can discover valuable lessons and apply improved care strategies by electronically linking patient information in fields like diagnosis, treatment, survivorship, recurrence, and quality of care with a learning infrastructure to bring together patients, doctors, and researchers in a new environment.

The U.S. Department of Health and Human Services is actively building a strategy to bring about this new era in medical care. Approximately, $20 billion is being spent to help doctors adopt electronic health information technologies. Equally important is the role of the patient in this new system. Awareness and participation among patients and advocacy groups will be essential in putting together a patient-centered healthcare system. And creating electronic systems which incorporate the needs and views of the patients benefits both the individual patient and his or her care team.

As the nation moves to embrace this technology in our healthcare infrastructure, it will be important for patients to ask their doctors if they use an electronic health record system, and, to ask for these systems to be accessible to patients to improve care, communication, and medical knowledge.

3 thoughts on “Building a Learning Healthcare System for Cancer Research and Care”

  1. Jerome Frank says:

    It is great that healthcare professionals are finally plugging in. However IT for healthcare, in its infancy, is a tool for providers. Lord knows they need it, but a more mature and useful system would be patient centric, the way treatment is supposed to be. Providers with pcs now spend patient time glued to their pcs rather than the patient. Patients have no online access to their own data, including records, appointments or communications with physicians. In order for healthcare IT to become relevant it must provide a prominent role for patients. Until then, patients will continue to create and use their own networks.

  2. Laura says:

    Hi, talking about healthcare learning and information technology I want to let you know the Alliance of Italian Hospital Worldwide, the Association where I work, which belongs to the Italian Ministry of Health. It puts doctors from the main Italian Hospitals in communication with Italian Hospitals abroad, also working in the poorest areas of the world. The main projects are the syncronous and asyncronous health teleconsultation and the e-learning courses, aiming at a sharable knowledge on diagnosis, treatmets, etc. for each and every pathology. For further information, please visit http://www.ipocm.salute.gov.it or contact me.

  3. Well said! We take many things for granted in this country, but somethings that seem obvious aren’t readily available. We must move forward in electronic records, health care would provide much much more if we all could access each patients history at the drop of a hat!

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