In Need Of Diagnosis, Inc. (INOD)
Mission and Objectives
IN NEED OF DIAGNOSIS, Inc.’s mission is to promote changes in the medical system to increase the accuracy and timeliness of diagnosis and to be a resource center for those who suffer with illnesses that have eluded diagnosis.
At first thought, bringing about change in the health care system may seem an impossible task. It is not. There are very specific things that might be done to improve the situation of those in need of diagnosis.
1. Promote the concept of developing a medical specialty in ‘Diagnosis’. On TV there is Dr. House who is a master diagnostician. But how, in real life, does one find a doctor with expertise in diagnosis? There is no such medical specialty. In fact, a good diagnostician would be the reverse of a specialist. He or she would be a highly trained generalist. Whereas specialists take a microscopic view of particular aspects of the human body as blood, bones or eyes, a generalist would see all systems interacting together. Further, they would avail themselves of medical diagnostic software programs to sift through the symptoms of the 7000 rare disorders as well the symptom of disorders that are less rare.
2. Develop and promote the fields of Clinical Biochemistry, Physiology and Anatomy. There is a glut of new information in the field of science and medicine and the information is increasingly more complex. Physicians have basic knowledge in the fields of biochemistry, physiology and anatomy but higher levels of expertise are available from PhD’s. As psychiatrists now refer patients to PhD psychologists for certain things, medical doctors could benefit from having clinical biochemists to whom they might refer patients for a consultation especially in disorders involving metabolic and mitochondrial problems. Availability of clinical biochemists in the community may make it unnecessary for patients to travel to distant medical centers for this expertise.
3. Employ computer technology to sort through symptoms and identify patterns. No physician can commit to memory, the signs and symptoms associated with all the known disorders. Computers can sort through information quickly and accurately.
4. Create new screening tests. There is now a test that can screen newborns for over 40 metabolic errors using one drop of blood. No such test is available for adults. Metabolic disorders can affect the ability to assimilate nutrition, detoxify waste, produce blood cells, etc. The impairment of such abilities can cause debilitating problems which, if identified early, might prevent mental deterioration and physical disability.
5. Conduct screening tests. There are screening tests that can identify illnesses like lung cancer and ovarian cancer in the early states. Insurance companies, however, discourage the use of screening tests by refusing to pay for them. It would seem more cost effective to uncover illnesses in the early stage than having to treat them in their advanced states. .
6. Expanding the objectives of the Undiagnosed Disorders Program at NIH. The National Institutes of Health (NIH) has a program for Undiagnosed Disorders. At present that program has two objectives: 1) To provide answers to patients with mysterious conditions that have long eluded diagnosis; 2) To advance medical knowledge about rare and common diseases. It is proposed that the objectives of this program be expanded to include identifying and evaluating tools, tests, techniques and technologies that might be useful in arriving at a diagnosis.
7. Make it possible for physicians to code an illness as, ‘Diagnosis unknown’ . There is no diagnosis code for ‘diagnosis unknown’. Since a diagnosis code is required for a procedure or test to be covered by medical insurance, physicians with undiagnosed patients have no choice than to assign a less than accurate diagnosis code. This obscures the problem and makes it difficult to difficult to spot new, previously unknown disorders. It also makes it impossible to determine how many in the population have undiagnosed disorders.
8. Encourage the development of new patient-use devices for diagnosis – An example of this would be a monitor that a patient could wear all day to track their vital signs as body temperature, blood sugar and blood pressure. This information could be transferred from the device into a computer which would organize it into a chart or graph that the person could take to their health care provider. This would make it easy to pick up spikes and drops and to identify possible causes.
9. Create tools in the form of databases to assist those searching for a diagnosis.
A. COMPARISON DATABASE: This database would contain information collected from persons who have already been diagnosed. Information collected by questionnaire from persons who are undiagnosed would then be compared to the signs and symptoms in the database of those who are already diagnosed. Based on the results of the database search, the undiagnosed person would be provided with information as to which disorders, if any, had signs and symptoms similar to theirs; they would be given information about the disease and information about what type of tests would need to be done to diagnosis the illness. NOTE: Initially database information will be gathered from persons with rare diseases. It will later be expanded to include information from persons with less rare disorders as ovarian cancer for which early warning signs are not now readily recognized.
B. SUBSTANCES DATABASE: This database will contain the signs and symptoms associated with the use, misuse and abuse of foods, herbs, medications. Licorice, for example, contains a natural form of cortisone that can stimulate the adrenals. The antibiotic, Ciproflaxin, can cause spontaneous rupture of the Achilles tendon. Statin drugs can cause weakness or cramping of the leg muscles as well as mental dulling. Some high blood pressure medications trigger coughing. With greater frequency, drugs are being prescribed to treat the side affects of other drugs. This adds unnecessary layers of complexity to identifying the underlying problem.
C. LOOKING BACK DATABASE: Interviews will be conducted with elderly persons who have been living with a rare disease. They will be asked to describe what types of problems the rare disorder has caused for them. A man who was diagnosed late in life with a rare muscle disease says this now explains why he ‘ran funny’ when he was a kid. If a particular form of ‘running funny’ is found to be consistently associated with this diagnosis, it might be used as a screening tool for picking up the disorder early in life.
10. Establish INOD and its mission to a point that it provides for those in need of diagnosis have an identity and a voice. Those who suffer with illnesses that defy diagnosis tend to fall through the cracks of the medical system. Without a diagnostic label, they are invisible. Their numbers are unknown. No provisions are made for meeting their special needs. In Need Of Diagnosis, Inc. (INOD) will be their voice. It will insure that their needs are made known to those who can make a difference and to those who determine where public health care dollars are spent.
11. INOD Supporters. At some point, most of us will be in need of diagnosis. It is to everyone's advantage that diagnoses be accurate and be made within a reasonable period of time. To bring about the shift in the medical system needed for this to happen will require considerable public support. Please sign up as an INOD supporter.
12. Create and maintain a web site for INOD. INOD’s web site provides information that may prove helpful to those in need of diagnosis. There are articles on subjects as how to find a good doctor, member stories, the names of health care practitioners recommended by other INOD members, etc.
13. INOD shall have help and support available by telephone and email. Any one in need of diagnosis or their care giver may contact INOD to discuss their situation. INOD DOES NOT DIAGNOSE but can sometimes provide information about how the person might find help or how they can more effectively pursue a diagnosis. In certain situations it may able be possible to put people in touch with other members who have a similar problem.
14. INOD Web Forum Those who are ill and have been unsuccessful in their efforts to get a diagnosis have much in common. They feel alone. Their physicians, friends and family become frustrated and tend to withdraw when there appears to be no solution to their situation. By communicating with others in a similar situation, those in need of diagnosis can get and give moral support. They can also share things that they have found to be of help.
15. INOD Writers program. It often helps if a person who is having difficulties expresses their feelings and describes their situation in writing. There is a section on INOD’s web site entitled, “MEMBER STORIES”. This is also a way to provide a means by which others can relate. INOD can provide help to those who would like to write their story. Having something in writing can also be a way to communicate with health care professionals.
16. INOD Ambassadors program. People who have an interest in helping persons in need of diagnosis, can become an ambassador for In Need Of Diagnosis, Inc. (INOD). INOD can provide them with information to be handed out or presented at meetings in their local communities and can support the Ambassador if they choose to begin a support group in their locale.
17. INOD Legacy program: An INOD Legacy member is one who has made provision in their will for a contribution to be made to INOD and who advises INOD that they have done this.
IF YOU BELIEVE THAT ACCOMPLISHMENT OF THE ABOVE OBJECTIVES WILL IMPROVE HEALTH CARE, PLEASE BECOME PROACTIVE.
Money alone will not make things happen. The public voice must be heard. Health insurance companies who, by withholding payment, now dictate to both physicians and patients. This must change. Traditionally it has been the health care system rather than the consumer that has decided what kind of services are provided. Surely it wouldn’t be the patient’s choice for hospital laboratories to be closed on the weekend so they would have to wait until Monday to find out if they have encephalitis or cancer.
In a free market economy, it is the consumer who ultimately decides which goods and services are produced. Health care must join the free market system and become attuned to the fact that, in the end, it is the patient’s needs that are to be met.
In Need Of Diagnosis, Inc. (INOD) would appreciate your financial support. More importantly, you are asked to be a friend to INOD’s mission and to advocate for changes in the medical delivery system to help those in need of diagnosis – which some day may be each of us.