To fix health care, release our data

What is the future of health care? How will we actually lower the number of people who suffer or die needlessly?  How will we deliver care more effectively? Today, two ideas are competing for attention in this space:

  1. Personalized Medicine
  2. Personalized Wellness

Let’s talk first about Personalized Medicine. There is a lot of talk about the future of medicine being personalized medications. What is usually meant by this is that the blood and DNA of the patient is analyzed and then, using data gleaned from the EMR, a medicine precisely tailored to meet that patient’s need and their metabolism is prescribed. This is of course a wonderful vision—one that I would have loved to see realized a few years earlier. My mother was given several medicines for her recurrent ovarian cancer that were more or less ineffective.

Now it isn’t a pipe dream. There are blood and DNA tests run today for medicines like Warfarin or treatments for breast cancer. The best example is AIDS/HIV where DNA of the virus is used to determine which retrovirals will work. But in general, this is turning out to be very hard and very slow to do. It is hard just to figure out which medicines work for who based on their blood, DNA, and other phenotypic data. It works in some cases but fails in many. And even when a drug targeting a specific genetic profile is engineered, it is difficult and expensive to deliver to the right place in the body at the right time, in the right amount, and for the right duration. For example, we’ve known a lot about the genetics of cystic fibrosis —i.e., which proteins aren’t being generated properly in the lung cells due to mutations in a specific gene. Presently there are viruses that have been engineered that can generate the correct, functioning proteins, but the means to deploy an effective treatment has yet to be solved. Still there are clear examples of personalized therapies based on an individual’s DNA which help prolong life and have sufficient sales to warrant biotechnology/ pharmaceutical interest.  The clearest example of this is the drug from Genentech called trastuzumab (brand name Herceptin).  All in all, it is likely that it will be expensive and hard to change the DNA, but that the ability to produce solutions based on one’s DNA will be more viable.

Another issue is cost effectiveness in producing personalized medicines when such treatments serve a small market; the more specialized the medicine, the less likely it is to be developed. Thus, will we see a slew of highly personalized drugs targeting unique genomes or disease organisms? As was said in the movie “The Princess Bride,” when two magicians tried to bring the hero back to life and one magician asked another “think it will work?”, the reply was “it would take a miracle.” Of course in the movie he did come back to life, but life isn’t a movie.

Now let’s talk about Personalized Wellness. The leading causes of death relate to life style, lack of routine medical examination, and basic outages in care.  Put differently, it doesn’t require medical miracles to prevent far more disease and avoid far more suffering and deaths than all those caused by cancer (outside of lung cancer) each year. It requires personalized wellness and “good health incentives.” What is personalized wellness? It is personal advice to individuals about their health that takes into account their health data, their personalities, their goals, and their activities and what is the appropriate standard of care for them. It involves tracking their progress or lack thereof—what the Robert Wood Johnson Foundation has called ODLs or observations of daily living.

It’s possible for people who are at risk for diabetes or heart disease to avoid these diseases.  And for those who already suffer from them, it’s possible to cure them by clearing up their arteries or at least stop complications like blindness and renal failure. If they are living with asthma, get them the personalized help they need to minimize attacks and shorten episodes. If they are living with depression, give them support and tools like breathing calmly, meditation, regular exercise, and smart diets. This isn’t magic.  There is much scientific evidence about what works, and translations for healthy living are plentiful on the Web.  Think, a site that balances your budget, for health. The cost of building a site that empowers patients to manage their health is a tiny fraction of the cost of a single medicine being brought to market. Will DNA count in this space? Certainly. Some people have lower risks based on their genetic makeup, and others have higher risks. Certain nutritional interventions will benefit some people and may harm other.  But DNA testing can also inform intelligent prevention.

We want both personalized medicine and personalized wellness. But we can have the latter much sooner and it will probably do more good, at least in the next decade or two.

There is one thing making it very hard to deliver on this vision today. Much of personalized wellness advice depends on basic lab results like the lipid panel. The person with a total cholesterol of 150 may need different advice than the person with a total cholesterol of 250, for example. Today, if I go into a lab to get my blood drawn, say for my checkup, I cannot download the data into my personalized wellness tool of choice unless my doctor electronically approves it.  Not because the lab cannot support this—90% of labs performed outside hospitals are covered by Quest Diagnostics or LabCorp and both support electronic data transfer.  Rather, a doctor’s electronic approval is required to release the lab data to the patient, even when the patient wants this data. Well, most of the doctors aren’t using electronic systems and most of the ones who are don’t have the ability to approve these transfers, while some of the ones who do have the ability choose not to. The notable exception is Kaiser, which delivers labs to all of its patients online at the same time that the patients’ doctors get them. Three million patients use Kaiser’s PHR and the number one use is for viewing labs. Kudos, Kaiser!

But if you aren’t lucky enough to be a Kaiser member or want to use a different tool for this purpose, you are out of luck. (Actually, Kaiser may be integrating with Microsoft HealthVault and then one could use one’s own tools, but the timetable for rollout is unclear.) This is like not being able to use because your bank won’t allow the transfer of financial data to your account at that site.  It makes no sense, and is one more example of how the system foils patients’ attempts to take responsibility for their own health.  It clearly stifles innovation in an area that has the most potential to solve economic and personal health care issues in the U.S.

I call on DC and the State Legislatures to change these laws.  Learn from Kaiser.  Pass laws that specifically give the lab companies the obligation to deliver our data electronically directly to us – the people, if we want it. If you desire true health care reform that actually will lower costs and curb illness, unleash the power of the innovators to help consumers with personal wellness as does with financial wellness. Release our health data.

4 Responses to To fix health care, release our data

  1. […] Personalized Medicine Personalized Wellness Let’s talk first about Personalized Medicine. Read more about To fix health care, release our data Get pricing and discount on generic medicines for […]

  2. Adam,
    We at MedGoline do agree with the vision, except we feel that consumers need more freedom. We at MedGoline feel that there is a sheer lack of tools, communicative and real-time in nature, but do have ability to connect individuals with similar interest and experience to share and educate each other. We as consumers need to know more and understand more to ask the right question and get better qualified knowledge. We should be responsible for our health information and should have control over it.
    That is why MedGoline was formed.


  3. Dave B says:

    TriZetto is trying to sell something similar to the health insurance companies: Integrated Healthcare Management (IHM). You may want to check out The big difference between what you are proposing and what IHM proposes is that the health plan, rather than the consumer, is at the center. This can be both a positive and negative thing, depending on the benevolence of the insurance carrier. Anyway, just an FYI…

    DISCLAIMER: I work for TriZetto.

  4. […] more from the original source: To fix health care, release our data « Adam Bosworth's Weblog Tagged as: ability, data, Display, future, health, mac, movie, patient, personalized, […]

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