It’s time to state the obvious. We are essentially a three party country now trying to pretend we are a two party country. We have the Democrats, largely unchanged since Bill Clinton revamped who they were to be in favor of economic growth. We have the “old Republicans” once defined by Ronald Reagan who were actually pro-science, pro-business, pro-immigration (in those days it was the Democrats egged on by labor unions who were against immigration) and against the government telling you what to do in private although a bit mealy mouthed about the latter. Perhaps most importantly, the Reagan Republicans were fully aware that intelligence mattered and that compromise was necessary to getting change made, for example getting the consensus required to make the most sweeping and helpful changes made to the US tax code in decades. Full disclosure. I voted for Ronald Reagan. Lastly we have the Tea Party, reminiscent of the old No Nothing Party of the 19th century, anti-science, anti-business, anti-immigration (especially of anyone who looks different regardless of how much smarter or more talented they might be) and really anti everything except that they are in favor of having the government tell you what you can do in your private life. The irony of Paul Ryan being a Tea Party darling who calls himself a Libertarian is that he would be Ayn Rand’s worst nightmare. Most importantly though, (at least for those of us who create wealth in the country and real jobs) the Tea Party is essentially pro-stupid. Data means nothing to them. Strategy means nothing to them. Actually studying and understanding economics is foreign to them. Having a public tantrum about the fact they don’t agree with the rest of the country (only 30% of the country has a favorable view of them based on the polls this week) means everything. We should just admit we have three parties, let them have their own primaries and hold three party elections. Heck, Ted Cruz and Sarah Palin can duke it out for who runs as Presidential candidate for the Tea Party. God bless them.
I haven’t posted for a very long time because I’ve been busy turning a startup into a going concern and, frankly, occasionally what I’d like to say might annoy clients. However enough is enough.
Yesterday was one of the most shameful days I can recall in our nation in my 57 years. Despite the pleas of the bereaved parents from Sandy Hook 46 Senators chose not to make background checks mandatory on gun sales. Background checks!! It is like saying that it would be wrong to even try to keep these terrible weapons of destruction out of the hands of bad people. Have they no decency? Have they no children of their own? Do they truly think they are worthy of representing this great country when they cannot even agree to try and keep guns out of the hands of the wrong people?
I am ashamed of the Republicans who once were a great party and stood for competition and freedom, but also stood for building a great world for our children to grow up in. Now they support the polluters who destroy the environment our children will inherit, the armed crazies who threaten the life and serenity of our children as they grow up, the health of our children fed increasingly terrible foods (read Salt, Sugar, Fat), and in general the welfare of those who are our future and deserve our help and protection as they grow up. But most of all, I simply cannot imagine how the people who represent this great country could look those parents of Sandy Hook in the eye and then vote to allow these weapons and to prevent background checks.
They are beneath our contempt for their total lack of decency, once an American hallmark, and frankly, if you support the NRA or these Senators in this vote so are you.
This is a direct quote. James May, chief executive of the Air Transport Association, the industry’s largest trade group, said Monday that its members would comply with the new rule “even though we believe it will lead to unintended consequences — more canceled flights and greater passenger inconvenience.” He added that “the requirement of having planes return to the gates within a three-hour window or face significant fines is inconsistent with our goal of completing as many flights as possible. In other words the Air Transport Association representing the airlines doesn’t care about us being stuck on the ground in a plane for more than 3 hours if they can fly more planes. They might as well tell us that they don’t care about us at all. Hello. We pay your bills. We are your customers.
It is always amazing to hear such organizations admit that the comfort and service to the customer is simply not a goal.
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:
- Personalized Medicine
- 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 mint.com, 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 mint.com 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 mint.com does with financial wellness. Release our health data.
Alexandra Drane started a wonderful movement called Engage with Grace over a year ago and she asked me to join a Thanksgiving rally supporting this movement. I’m happy and proud to do so. As I wrote in one of my most contentious posts, once my mother was diagnosed as being terminal after a valiant 4 year battle with Ovarian cancer, the system totally failed us. Support turned to indifference. Every attempt was made to have my mother end her days in the hospital rather than spending her last 2 months at home. It was only because of my connections and resources that she was even able to end her days with dignity surrounded by those who loved her. Indeed just days before the end, she was able to be taken in a wheelchair to the library she had presided over for over 40 years at Saint Ann’s School and see it officially renamed to the Anne Bosworth library and hear the tributes of all who have known her and learned from her. All this would have been denied if the current “health system” had had its way. It is this indifference to the needs of those at this stage of life that the movement is dedicated to combating and I enthusiastically endorse it. Engage with Grace has 5 basic questions everyone should know.
We are supposed to ask more lighthearted questions on this Thanksgiving weekend, but I’ve been unable to get WordPress to accept this questionnaire and I think it is a sign. We need to change the system profoundly to take human needs into account first. We need a system that works to meet these needs, not to try every possible futile procedure leaving those poor souls to suffer their last weeks or days in pain and indignity against their will. This is a serious business for those of us who have lived through this, seen the suffering first hand. We give thanks for many things this weekend but we look forward to the day when we can give thanks for a caring health care system.
To learn more please go to http://www.engagewithgrace.org.
Keas has launched. Keas is a place consumers come to when they want to take charge of their health or that of someone they love. They come to get the personalized advice and content that they need to understand their health and to know what they need to do and to be reminded/helped to do it. Keas delivers this personalized advice via Keas Care Plans. Think of each Care Plan as a set of great health experts giving you personalized interpretation and advice about your health and what you need to do based on your health data, your goals, and your progress to date. Not just once, but on an ongoing basis. But we at Keas don’t write these Care Plans in general. Great experts in health, whether in pediatric Asthma or dealing with H1N1 or with Diabetes do so. You don’t need to be a programmer or have an IT department to build Keas Care Plans, but you do need to have great health experts, great content people and usually (at least for your first one) help from what we have come to call Keas Producers.
We at Keas have been overwhelmed with astonishing potential partners in the health field who want to build great Keas Care Plans. We are humbled and gratified, but we are also urgently in need of someone to lead this effort for us. What sort of person do we need? We need someone with passion for the customer who will work with every partner to ensure that their care plans are engaging, personalized, helpful and responsive and hire/manage the Keas producers we need to help the partners in this effort. We need someone who will be able to understand the health issues involved, but also the consumer passion and who can help our partners not just to deliver content personalized to the need, but video, twitter, great links, living discussions, polls, and everything else required to actually help the users of their Keas Care Plan to get the most out of it.
So, in short you need to be a leader, tireless,willing to get your fingernails dirty and lead by doing, passionate, unafraid of risk (this is a start up!), excited and knowledgeable about health, great at working with partners, with good business sense, experienced in building and leading teams that partner with others, and with an understanding of how the web is changing from a text world to an interactive and video world. If this is you and you want to help our partners produce the 100’s of care plans they now want to build, then let us know please at email@example.com.
John Halamka put up a thoughtful piece today which I for one heartily endorse. I’ve worked with John off and on since starting Google Health and we have really traversed down this road together.