Who cares? Why even bother? What is the point anyways?

Okay you all got me.  I am just a guy hiding in a programmer suite who is trying to figure out what people would want to make them interested in something most likely could care less about. Stepping out the programmer suit, if you will humor me, it is time to answer a simple question.  Seems some might be wondering for whom and why does this site exist.

This is an easy answer for me.  It exists for you because your human.   Yes that is right; I built this site for YOU to have basic use of for free, because you are human. 

Still not that exciting?  How about considering who diseases or disorders affect?  What language do people who get diseases speak?  What do people with health problems have in common?  Does religion play into who gets diseases?   What about race?  It seems fair to say that nobody has ever lived who did not experience pain, which did not have a disease, disorder or birth defect.  More simply put, the only commonality is that they are human.  So since we are all human we are all likely to share the same basic issues with being human.  In other words we are all likely to experience the same diseases, disorders or defects.

Now for the hard part of the answer which deals with why.  There are so many reasons why from helping out your fellow man, helping your family, saving money, peace of mind and for your own health.  I know it sounds crazy that using a site could do all these things and it is free at a basic level to use.  Without going into economics and supply vs demand principals use of a site like this can save you money.   A recent article by the AP covered a study that proved looking at family history to currently be more accurate than genetic testing.  Many in the medical field have also commented on how important this information is.  So how does this save you money?  If you can avoid having extra medical tests done then you have saved money and maybe helped you’re overall health.   This helps your health because not all medical tests are a simple drawing of blood but instead may involve radioactive dyes or x-rays.  Those x-rays, by the way, were recently listed as increasing your risk of cancer later in life every time you have one. 

We work many hours to earn enough to pay for insurance.  Strange that the benefit of investing a little time logging your health experiences can provide almost as much benefit to you, your family and the rest of us.

The site should open in a few weeks.  We are still working out a few details to make sure we put our best foot forward.  Any comments as to how we could make the site better are always welcome.  As is, unlike any other health site, we leverage data the site collects to benefit our users.  You can search for diseases by symptom description or the diagnosis itself.  The site will even flag issues that your family members have reported.  Later with more advanced services, our users should be able to research diseases by location, race, gender or even age.  Our main goal is to help people educate themselves on their family history and learn what certain health issues are like. Secondary goals include bringing attention to untreated disorders and which drugs are most affective against which diagnosis and others.

For those taking time to read this, we thank you for taking the time you have. 

We would especially like to hear from those who want better tools to research rare diseases than are easily available now.  As always any comments are very welcome.

Thanks again-

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Key Concept 2 - The Bottle Neck

The second key concept has to do with medical knowledge and what options do people have to obtain it.  The first thought that comes to mind for most is simply to see their doctor.  Other times people may ask their family members or friends depending on their comfort level.  Then of course you could always search the internet and while tools have improved you still needCollapse ) a pretty good idea as to what the diagnosis is for any real help.

The first option of going to see your doctor generally has the best results as far as easily getting quality answers.  Medical professionals by default have the best opportunities to learn about problems we tend to have as humans.  The problem with always seeing your doctor for everything is fairly clear, it is the cost.   As we rely on doctors for 100% of our health concerns, even the minor ones, we had to start competing for their time.  In our country we compete by offering more money which puts some in our population at a disadvantage.  This competition also drives up the cost for everyone as it is impossible for doctors to treat every scratch and bruise anyone may encounter. 

Seeking advice from family members is a much cheaper way to go and you can get some great information.  The trouble with seeking medical help from family is that they are not always a great source of quality information.  If the problem your experiencing is common in your family then it seems fair that your family might actually know more about it than an average doctor who has had no experience with the condition other than reading about it.  Then there is the trouble that people in your family may forget or not have noticed a certain issue.  Previous generations are not known for talking up their medical problems and unless they experienced something first hand, they may not remember hearing anything of use. 

Then we have the problem of comfort level.  A person may be no more comfortable asking their parents about a medical problem than anyone else.  People have enough trouble approaching their doctors about sensitive topics, many would rather search the internet than admit a condition to people they know.  While there is some great information available via the internet there is the problem of finding it.  Even today it seems that unless you have a diagnosis, finding help through the internet is almost impossible. 

The challenge we found in this was from whom do we get quality information and how do we make it available to those in need without having to charge a lot of money, may anyone uncomfortible or take a lot of time.   We felt it started with those who could afford accesses to the doctors with the best information.  Ideally if we could obtain information a patient had "purchased" from a medical professional and capture the patient experience too, then we could use that to help those without access to medical care.  In short this is all about disseminating information without degrading its quality and doing it in such a way that the information is both helpful and resilient to misunderstandings.   If the benefit of one person having medical access helped even a few others, it should start to drive down cost for everyone and may even lead to better treatment options all involved.

Symptom Exchange Key Concept 1

Since this is supposed to be more about the site than some of the founding logic that contributed to the site, thought we should get on with it and post about one of the larger key concepts employed by our new site, the Symptom Exchange. 

This first concept centers on what we perceived to be a three part contradiction in values with our current health care system.  These three parts are related to identity, health record and benefit.  Certainly each of these parts has a reason and place in the current system but we thought they were key problem areas which hold back progress and keep costs high.

First let’s consider the identity part.  Really the identity of a person is virtually irrelevant to a diagnosis.  The reason I say virtually irrelevant is because the identity itself means nothing but the link it represents could be of great value.  Aside from making sure you have the right patient records and billing information, the identity has no relevance.  With all the user ID's and passwords we are already accustom to using, this information could be easily removed from our medical records. 

You might wonder why we would want to remove personal identifying information from our medical records.  The reason is simply privacy and usability of information.  HIPPA does have its good points but considering that the indentifying information is not really required to be part of our medical record, we seem to have missed an opportunity.  We could have had less legislation, less forms to fill out and ultimately less cost.  If you’re curious how this would lower costs, consider all the HIPPA training and compliance training those medical professionals are now required to do.  This particular solution to our issue of privacy has a serious cost that is now contributing to the problem.

The second consideration focuses on the health record itself.  To really understand why our health record is so important we must also realize its purpose and flaws.  Our health records were initially just a collection of medical information on us.  Then they became commodity that could be passed around to government agencies as well as other medical businesses.  I believe they are even used as a means to track charges for insurance purposes as well as give justification.  So what has initially started with the purpose for storing notes has turned into a record for accounting, billing, legal justification and accountability, health trending and more.  The only one not maximizing their benefit from the health record is the patient who is ultimately paying for this record keeping and research.  Being realistic how could we maximize benefit?  For us to maximize benefit now, we would have lowered the benefit to others.  Considering HIPPA and that personal identifying information is contained in our health records, we can't even look at someone else's medical record much less leverage the data in it for anyone's benefit.  After speaking with biostatisticians, even they claimed that de-identified data from medical records is virtually worthless. All things considered it sounds like in general the data is there, but is not legally usable because certain information not directly needed for treatment has been included. 

Before we continue discussing benefit, let’s assume that all of us are paying for insurance, this means we are all basically contributing to the creation of everyone’s health records.  Continuing on, we felt it was fair to say that the health records are really the research that we all pay for and often times the product that we purchased.  It is true that some may argue that we really purchased is time and resources.  To this we would ask who would purchase time and resources if it did not also provide value.  This is where the potential comes in for medical records.  If a medical record was built differently and contained input from the patient as well as medical professionals, it could be extremely valuable as a diagnostic tool for everyone.  Consider if your family had all their records organized such that you could leverage all the data they purchased as needed to solve a personal health issue.  Next lets multiply that by 1/10th of the families in the US, now you could leverage all that data to try and understand your own situation better.    We strongly believe that this consideration has real potential to help people maximize their value from every bit of funded research.  Just imagine the savings if on a national level medical professionals could make a diagnosis with significantly fewer tests.  Also imagine if instead of seeing several doctors before getting to the right specialist, you could see the right specialist on the first try. 

The contradiction is that we pay into a semi-socialistic health care system that only provides minimal value at an individual level.
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Once you determine for yourself that something is wrong....

The only acceptable response is to the next question... "What?"

You might be wondering how you know that something is not just in your head. First you should consider how stable of a person you think you are. Are you confident that you are perceiving things correctly? Did you get upset when someone suggested that you were making it up? Have you found any others that have had the same or similar experience?   

While it is entirely possible that it could just be something your mind is making up, there are usually clues if that is not correct.   One good clue would be if there is anything you can visually see to make your experience less subjective. It could be as simple as your pants are obviously tighter or a hard spot deep in soft tissues that seems out of place.    The goal is to find any other disturbance that relates to what you are experiencing.    If it were just in your head, in other words you’re either imagining it or making it up, then to confirm that you should honestly consider if you have had any breaks from reality or some other such disturbance to suggest your brain is not working correctly.  

Once you have established existence of another disturbance to go along with your “made up symptom” it should be an indicator to you that it is not likely just in your head. By the time you have reached this point the only thing a person can or should do is to try and answer “What” is going on.   Any other response such as “it’s all in your head”, only serves the person saying it. For the person receiving such a statement it does cause harm. Harm is done by discouraging them from trying to gain a better understanding of what they are experiencing. This prolongs the persons suffering and encourages them to doubt reality.

This is merely opinion and some thoughts to consider,  not medical advice. 

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What makes a rare health condition so difficult?

What makes a rare health condition so difficult to solve is that you have to find a doctor who has solved the right rare condition.

Like in many professions, a Doctor tends to try and look for patterns that they can associate with something they recognize. In this case we are talking about matching symptoms to make a diagnosis. When people see something unfamiliar it is normal for them to try and fit it to something they do understand.  For those with rare diagnosis that can be a serious problem.  Imagine being treated for the wrong diagnosis and getting worse.  Now imagine repeating this misfortune over and over until you can find a doctor who has seen your symptom set before and correctly identifies your diagnosis.  This is costly to the patient and difficult if not impossible depending on the symptoms.

The issue here is one of human condition on the side of the doctor and patient.  The doctor cannot reasonably be expected to have experience with every possible diagnosis.   The patient being limited to publish research also has a slim chance of making a positive impact on the situation.  While the internet has created potential there is still no way for people to search for possible diagnosis based on their terminology.

Patient Focused Patient Driven Health Site

The Symptom Exchange (www.symptomx.com) is a new sort of health site about to open.  We will soon have a need for beta testers to help evaluate the site.  The basic idea of the site is to provide people a safe place to store their health information and leverage any knowledge gained from such data to help others with similar issues.  The key difference with this site as opposed to others is that this site is intended to keep the user anonymous and in full control of their data.

This site allows users to store as much or little as they want about their own health history.  No personal identifying information is required from our users or sought.  The site was specifically built so a user can change both their login ID and password at any time, without loss of data.  Users can choose to link their account to others via a shared ID or not.  Those who choose to share information can then decide what exactly they are comfortable with sharing and with whom.  Should at any point a user decide not to share their information with another person, the information immediately becomes unavailable to the other user. 

Once a user has entered their health experiences and possibly linked to other family member’s information, family history reports may be generated.  These reports provide only health information as oppsed to who it relates to with a goal of helping a doctor narrow down a diagnosis.  This means that aside from relationship and age of diagnosis, no identifying information is listed for anyone who's information is on the report.  If the report is lost, no harm done, it could be for anyone.

Another difference with this site is that it looks to get first hand information.  Many similar sites look for one person to tell all about their family.  The view of this site is that first hand information on an experience provides better information and encourages respect of others privacy.


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