We have access to more health information now than any time in history, yet this deluge of medical data may sometimes make health decisions more difficult. The Internet has opened a Pandora’s Box of data that can easily overwhelm us. We need a way to process all this information to assist us in making better healthcare decisions. Sifting through the barrage of health information writhing across the Internet can be a challenge and new sources are continually cropping up.
There are some great online resources that can help. Search sites are now guiding consumers to safe, trusted health websites, says Susannah Fox of Pew Internet. Both Google and Bing are entering the health search arena by providing a highlight at the top of health related searches that allow you to access a wealth of information. Compare the results of a search on “type 2 diabetes” from Google and Bing. While they both present relevant articles from their libraries of health resources and present a summary related to the query, so far I have seen better results from Bing but Google is gaining fast. I expect both will continue to refine these algorithms to improve results. Google has also updated their popular Flu Trends providing flu info for 121 U.S. cities. Previously, flu trends were available on a state and country level.
WolframAlpha can calculate clinical markers on cholesterol levels, BMI and a wide range of indicators. WolframAlpha computes a breakdown of total calories, fat, cholesterol, sodium, carbohydrates, protein, and other particular nutrients of most foods. And then there is the incredible Genetics Home Reference by the National Library of Medicine which provides consumer-friendly information about the effects of genetic variations on human health. The “type 2 diabetes” search here gives some very interesting results with detailed genetic information and many links to additional valuable resources.
One strategy to cope with all this data and help to create a framework for our medical decisions is to use a decision tree. In his new book, The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine, Thomas Goetz offers a structure to reduce uncertainty and allow us to make better choices. I was fortunate to read an advance copy of the book a few months ago and have had a series of interesting conversations with Thomas since then to discuss some aspects of the book. The decision tree is basically a flow chart to move us towards better healthcare choices. I am most impressed that he could take the rather complicated subject matter of personalized medicine and distill it into layman’s terms that make for an interesting and compelling read. The book will be released on February 16, 2010 and I highly recommend it. You can read Chapter 1 today on The Decision Tree blog.
It is basically divided into three sections: prevention, diagnosis and treatment; it is Thomas’s contention that we are all moving along this spectrum and our baseline is our DNA. One of the themes of the book is that by knowing and better understanding our genetic makeup, we can improve the medical decision making process. Spring boarding from a future of genetic medicine envisioned by Dr. George Church’s Personal Genome Project he leads us to the current state of personalized medicine with services like 23andMe and Navigenics which offer genetic testing. But with the cost of these tests, is this really for the average patient? “The price of genetic sequencing is falling rapidly,” Thomas said, “but I’m not actually calling people to start with genomics.” There are some basic starting points for using the decision tree strategy that don’t wholly rely on having your genome sequenced. The widget below gives you an idea of approach he takes:
The book describes his participation in a Quantified Self meeting, a sort of show and tell for people taking advantage of various kinds of personal tracking methods like geotracking, life-logging, DNA sequencing, etc. They track the various metrics in an effort to find quantifiable meaning to the data. These folks are “geeking out… just like the guys who stand in line for iPhones and then rush home and take them apart to see how they’re made. They’re just the same. Except in this case, the iPhones are their own bodies.” While it is important to have as complete information as possible to make better choices that will improve our health, he said, “Tracking your health with gadgets and gizmos is not for everyone. But not long ago no one even knew what their blood pressure of cholesterol level was and now tracking these metrics is quite common.” Tracking our health metrics and combining this with genetic data to use as a starting point for a decision tree can help us to make choices that will improve our health. Whether it is simply taking our blood pressure, or using the Twitter-based GetUpAndMove service started by Jen McCabe, keeping track of what our bodies are doing and what we do with them is good data to have.
One of the problems we face in dealing with health issues is finding drugs that actually help, and a chapter in Goetz’s book deals with the drug problem in healthcare today. While modern pharmacology has developed many drugs that have saved and improved lives, finding the right drug for the right condition is a challenge. And the blockbuster model used for research and development in the pharmaceutical industry is fading out. Some of the the promising drugs now in the pipeline are designed for smaller groups of patients. But as chapter 8 points out:
The pipeline of new drugs has slowed to a crawl, as one promising candidate after another has petered out in the last phases of development. “The low-hanging fruit has been picked,” says Derek Lowe, PhD, a drug discovery chemist and industry pundit. William Haseltine, PhD, a former researcher at Harvard Medical School and the founder of Human Genome Sciences and eight other biotechnology companies, notes that fewer than 1 in 100 new ideas reaches clinical trials and fewer than 10 percent of these are approved for sale.
But developing drugs for less common medical problems will require major changes for the industry. When promising molecules are found, and the chemistry works, the drug companies are anxious to get these to market. And all of those “failed” clinical trials (which may have produced valuable data) are locked away, leaving possible medicine for “lesser” conditions undiscovered. Goetz lays out a hopeful possible future where we enter into a new era of research that will rescue drugs and free the data that will help people to live healthier lives.
Drug ads are also sometimes misleading. By ambiguously defining who might need or benefit from the products advertised, they focus “on convincing people that they may be at risk for a wide array of health conditions” rather than genuinely educating consumers, concluded a 2007 study in the Annals of Family Medicine. Drug manufacturers maintain that their ads are not misleading. The Pharmaceutical Research and Manufacturers of America, an industry group, says: “Consistent with recently updated guidelines, PhRMA is committed to a fair balance of risk and benefit information in all direct-to-consumer advertising.” The “brief” summaries in direct-to-consumer drug ads can take up a whole magazine page, and make it very difficult for a consumer to understand and weigh the risks and benefits of the medication.
Drug fact boxes are a possible solution that could eliminate a lot of the ambiguity. These user friendly boxes, similar to the nutrition labels found on food, include facts not found in the so-called brief summaries.They are the brainchild of a husband-and-wife team: physician-researchers Lisa Schwartz and Steven Woloshin from the Dartmouth Institute for Health Policy and Clinical Practice. In a study published by the Annals of Internal Medicine, they tested how much consumers could benefit from understandable information on drug products. The data were collected via mailed surveys measuring respondents’ reactions to two drug fact boxes versus traditional direct-to-consumer advertisements. One trial compared two potential treatments for heartburn and the other compared two potential preventive medications for cardiovascular events. Of respondents who received the drug fact box on heartburn, 70 percent were able to correctly identify the most effective treatment, as compared to 8 percent of the control group. It’s obvious that drug fact boxes have the potential to improve consumers’ knowledge of the potential benefits and side effects of medications. The FDA is considering requiring factboxes so there is hope but the wheels of government grind slowly.
The book lays out three fundamental principles for making intelligent health choices. Number one is early is better than late. By learning genetic predispositions we can treat disease, sometimes before it even happens. Number two is let the data do the work. Using evidence-based medicine and monitoring the continuous stream of data we create, whether it be our diet, exercise, moods or DNA, gives us a baseline from which we can evaluate our future health. And number three is openness is a powerful thing. The more accurate information available to researchers, care providers, and consumers, the better decisions we can all make and the more options we will have for successful outcomes.
By making the most of the new science and technologies available and using the best practices from genetics, behavioral science, and information technology we have the opportunity to sculpt a process to better manage our health. Putting the patient at the center of healthcare and creating a strategy to process all of health data available today is a great start towards meaningful healthcare reform. While Congress debates payment methodologies, health insurance, and all of the political considerations which crowd into the discussion, we the people can take more control of our health today. After all, they are our bodies…