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Appendix B
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A Test Of Community Health Information Adequacy
For those of us fortunate enough not to have experienced the stress and complex decision making of a major medical problem, we can illustrate the issues with an example. We can take the most common variety of the most common serious medical problem in the developed world - coronary artery disease. Consider the following scenario.
You go to see your doctor about these chest pains you have been having after meals that you have put down to indigestion. The doctor, after carefully listening to the story, decides it is unlikely that you have indigestion and recommends instead that you have a stress test for your heart - the test where you run on a treadmill with wires on your chest. The stress test is positive and the cardiologist recommends an angiogram - the test where dye is injected directly into the coronary arteries while being X rayed to see if they are blocked to any degree. This test is also positive and it shows that you have 90% blockages of two important arteries on the front of your heart.
Now we come to the decision about what to do.
You could of course leave this decision to chance. By that I mean accepting the first piece of technical advice on what to do, assuming you can get someone to decide for you. The research quoted in the proposal documents indicates how frequently day to day clinical decision making is often not based on the best information. There are also additional non-clinical forces such as the regulations of HMOs which would determine testing and treatment regimes. Being treated in a well-known medical center is no reliable guide to optimum management either according to the research.
No one will lay out for you all of the alternatives and their implications even if they were available at the doctor's fingertips. It takes a lot of time explaining which the doctor just doesn't have. They may briefly mention a few alternatives in broad generalities but then it is up to you.
Normally you would have to start this process of investigating your options by just launching into the ocean of net material to even start to find out about all of the alternatives.
To make this exercise already unnaturally easier, let us suppose a very patient, 'up to the minute' cardiologist listed all of the issues for you to get you off to a good start in your search. Here is the list.
- You can do nothing and change nothing. What are the risks, what is likely to happen and when?
- You can try to stop or reverse the process that has blocked your arteries. What are the things that can be done and how effective are they and how well is this backed up in the most recent research? Relevant issues are Smoking, Total Cholesterol, HDL Cholesterol, Triglycerides, Homocysteine levels, Anti cholesterol drugs, Uric acid levels, Blood Pressure, Family history, Fitness level, Body weight and Diabetes.
- You can have a treatment called angioplasty where a tiny balloon is inserted into the coronary artery of your heart through a tube in your thigh. It squashes and stretches the blocked part of the artery and there is a certain risk attached to the procedure. You can have a very small rotor or even a laser in the same tube try to cut through the blockage. This has a different risk. This procedure has a 40-50% failure rate at 6 months when the artery blocks completely. What are the implications of a suddenly blocked artery? You can alternatively have two other newer related procedures in which a tiny tube or spring is inserted at the site to try to keep the artery open. These will have a lower failure rate, it is hoped, and the trials are in progress. There is an even newer device which is used to keep the artery open at the site which has a special drug coating to try and stop clotting, the chief cause of obstruction. This is also being trialed and we are waiting for the outcome.
- You can have coronary artery surgery. The standard operation involves a bypass machine and uses the artery inside the wall of your chest and a piece of vein from your leg to build 'conduits' around the two blockages. It has a mortality risk in good centers of about 2%. There is a new operation being trialed which does this procedure without the bypass machine and the operation is performed on a 'stabilized' though moving heart - technically more difficult of course. The results of these operations are being evaluated. There is another operation which, as well as not involving a bypass machine, consists of only partly opening the chest and is even more difficult technically. These operations are currently being performed and advertised as available, though they are being evaluated. The operation version using the vein from a leg has a 50% failure rate of the vein at ten years - the graft blocks. To try to extend the life of these grafts there is another new operation that uses a major artery out of your arm instead of the leg vein. There are some risks to the nerve supply in the arm and there may be significantly higher short term mortality risks in the operation but the longer term prospect for the graft remaining unblocked may be much better. This operation is being performed around the world and is being evaluated at the same time.
- There is an experimental procedure which uses gene therapy that may be very effective although at the moment it is being tried on patients not suitable for more standard treatments.
- Finally there is a laser treatment which drills holes part way through the heart wall to try to improve blood flow. It also is only currently being tried on patients unsuitable for the more usual treatments.
A lot will be apparent from the above. You would really like a single doctor to be in command of all the answers to the above. As you can see much relevant research is in progress and important results come out almost daily. Staying on top of that would be a demanding exercise in its own right given the time and the volume of material a doctor would have to sift through. The surprise to many in the community is there is no such central resource a doctor can go to get this information. It is a painstaking journal by journal exercise as no text document is anywhere near sufficiently up to date to be of use here. Clearly this fact alone is a major inhibitor to the doctor being on top of the information.
You could test the adequacy of community level health sites by taking this list of questions (it is already a large head start knowing what the questions are) and trying to find the answers using any number of community sites or even researching the journals.
WisDoc is designed for just this circumstance. Just like all the other health topics it will cover, the coronary artery disease section will have a continuously updated matching specialist doctor and patient account that is within four weeks of the original research publication date. It will answer all the above questions and very many more.
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