IamA (Dan Schiavello and I have been living with Stage 4 cancer for 8 years. One night when I became ill and was taken to the hospital, it was the program that I created that saved my life) AMA!

How open are hospital ERs to using USB drives? Do the drives you use have some sort of antivirus technology in them, ie they can only be written by your program?

How do the hospital ER doctors open the files? Does it come with a standalone executable so it doesn't have to be installed?

Do you expect to be able to interface with Health Information Exchanges?

It varies from hospital to hospital. I also use the Minerva PHR ap to access my health records on my ipad or mobile device. I am not a big fan of using the internet to store health records because if the CIA cannot keep their information secret, we are all doomed. Health records can of course also be printed out. The flash drive is written to be virus free by the Minerva software.

By the way, Minerva is the Roman Goddess of Wisdom and Medicine, named after my alma mater statue at Columbia University.

No installation is necessary in an ER. It simply uses the default browser and opens the health information as a standard html file.

We are always looking to develop relationships with EMRs that use health information exchanges. Our system is compatible with any of them that choose to share information with us.

I think what he was asking is if there were any way for someone to, not using the Minerva application, place a virus on the thumbdrive such that one could infect computers in a hospital by feigning illness and having them look at your records on the drive. It's a viable attack vector.

A secure cloud solution would probably be ideal but there's an insane amount of regulatory difficulties that I'm sure the hippa hippo would throw at you, not to mention a lot of peoples and, as I can see from your post above also your, apprehensions about putting data on the web for fear of governments obtaining, using, abusing, and losing your data.

I'm sure if they wanted the data bad enough they could just contact their mole at Cerner or [Insert health information data storage company here].

Thoughts?

Minerva Health Manager verifies that health records are placed on the flash drive or mobile device without a virus. However, there are always devious people who can intentionally contaminate the contents if they have access. It is sort of like leaving your luggage unattended at the airport.

What were some of the first symptoms you started having that made you think something wasn't right?

I had an appearance on a lump on my leg that grew. The surgery was successful with clean margins, but ct scan showed that the cancer spread to my lungs.

Where was the lump on your leg?

On my thigh. About 9 cm in length

Where exactly? Upper, lower? Inner outer?

Left inner thigh

I'm in IT and one thing I see with Electronic Health Records that really disappoints me is that it looks like we are going back to the past in terms of interoperability between systems. I can't believe the number of times I have heard that someone is going to "print off a health record from one facility, fax it to another facility where it can be scanned and uploaded into the second facilities medical records system. To me it seems like such a waste of money, time and opportunities to learn from all that Data. Do you see the same problems, and if you could change the way EHR systems are developing what would you change?

Unfortunately your observation is accurate. Electronic medical records do not speak to each other because of competition. Our system, a personal health record system, can talk to any EMR that wishes to do so. Exactly the reason patients need to take control of their own health information.

Was your flash drive marked in a way that let your doctor know he should plug it in and check it? Awesome story. I hope many people benefit from Minerva.

Yes, it is clearly marked with a medical symbol and use instructions are on the back of the device.

How has the cancer affected your personal life? and how bad is the pain usually?

In a strange way, cancer has made me more emotionally open, and in that sense, has been a blessing. By focusing on the positive, I have learned to tolerate the pain. Ironically, I feel the pain most only when people ask me about it. LOL

A sickened genius

can still be a creator -

and now more are saved.

Nice haiku!

I understand this feeling exactly. I get daily headaches and migraines, and I can ignore them, to a point, but when I get asked if I'm in pain at the moment, I'll evaluate and I probably will be. Then I notice it and it hurts more than it had 5 minutes before!

Exactly why I wrote the blogs about the Ten Worst Things To Say To a Cancer Patient!

When I read about the program you created and your story behind creating it, I was a bit surprised to see that it costs $50. With that being said, my question is: do the profits from the software sales go to any sort of charity or similar, or is it a for-profit business venture with the goal of making money?

My apologies if this is somewhere on the website. I'm on my phone and browsing the website is somewhat difficult.

By the way, you can actually purchase Minerva for $29.95 less discount.

We work with many non-profit organizations and when we do 100% of profits are donated to the organization. As an example, visit www.myminerva.com/tnt

Has there been any obstacles/feedback/encouragement from the FDA or other health organizations?

During a drug shortage when I was told with 2 days notice that chemotherapy that was keeping me alive would no longer be available, I have found the FDA to be, in my opinion, corrupt and insensitive. This inspired me to become an activist to help others affected by the drug shortage and to become a lobbyist to help end drug shortages. Unfortunately I learned that we need to be our own advocate. The FDA and our government have become too dysfunctional to be of any help. I have also learned the importance of taking control of my own health records and helped develop a product so others can do so as well. You may visit www.myminerva.com to learn more about taking control of your health.

Any thoughts on the FDA as portrayed in Dallas Buyers Club? Do you think they're better or worse than that?

I didn't see the movie, but I think the FDA is one of the most corrupt bureaucracies in Washington DC

What was your diagnosis? What is the ultimate prognosis, or have you lived so long the prognosis has been exceeded?

Its really amazing that you've not only lived this long, but also created a tool to help others. Have you and success in teaching emergency room doctors and staff to look for MINERVA when unresponsive patients arrive for care?

My diagnosis is leiomyosarcoma, a very rare form of cancer. Unfortunately cancer is an unpredictable disease, but I don't think about or accept a prognosis since none of us should play God. Sadly, the doctor that originally diagnosed me and told me that I could win my battle against cancer, has recently died of cancer.

As an activist, I have given many presentations to doctors and patients about the importance of accurate health records and the value of positive thinking.

I read a story once about a guy who was diagnosed with cancer, found out that was never the case and when he went back to demand answers, found all the previous doctors had died of cancer. Kinda interesting how the survivors (both believed and actual like you) often trump the doctors.

I'm seriously considering getting a MINERVA for my wife. She has Van Wildebrands, a genetic iron absorbtion disorder and celiac on top of a mild latex allergy (so far no anaphylaxis.) This would come in handy if she ever found herself out of our medical group.

I am happy to hear that. If you do decide to purchase Minerva, don't forget to use the promo codes have going through June 30th:

Use Promo Code 'DadsGrads2014' to Save 30%. Use Promo Code 'GIFTS2014' to Save 50% on 2 or more copies.

Best of health to your wife and family!

Is there no electronic patient file that is available to all doctors nationally in the US?

None that I know of, that's why patience need to take control of their own health records.

That really surprises me, now I finally understand your product.

Here in my country one's entire medical history is centralised and just a click of a button away for any medical professional.

~45% of Americans have records with Epic, the EMR company currently leading the market, while others have records with major companies like Cerner, Allscripts, Athena, etc. While interoperability between the systems isn't perfect, for the most part patient charts and medical history are available to doctors within a wide radius of their home location. There's no single central authority with every record, but it's a non-issue for a medical professional to gain access to EMR data in most situations.

Typically those systems produce information that are specialty specific and the information available to patients are usually incomplete and disorganized.

I fully support the importance of keeping track of your health records. If you are comfortable accessing your information from the internet, then I fully support you doing so. Even recording your health information on a Word document can help save your life. We believe Minerva offers a better solution, but of course I am biased!

Yeah, this is what I meant. It's fine that something like this is privatised, as long as everyone that needs it has access to it.

Part of the ACA ("Obamacare") requires that hospitals adopt EMR systems across the board or face stiff tax penalties, so within a few years the percentage of Americans with electronic medical records will approach 100%. Right now over 90% of doctors in America use an EMR of some kind.

If you want to know about the future of health care in this country, listen to the news in regards to what is going on with VA hospital system. My advice, take control of your own health and the health of your loved ones.

What's the best advice that you can give to teenagers today?

The best advice for anyone, is to remain positive and never give up. Easier said than done, but I am living proof that it is possible. The best advice for a loved one of a cancer patient can be found in 2 blogs that I wrote : The Top Ten Best Things and The Top Ten Worst Things to Say to a Cancer Patient. Some of course are more humorous than others. The links to these blogs are:

http://www.myminerva.com/blog/2013/12/the-top-ten-best-things-to-say-to-a-cancer-patient/

http://www.myminerva.com/blog/2013/11/the-top-ten-worst-things-to-say-to-a-cancer-patient/

How do you feel knowing that your program will save at least one persons life?

We get letters from people sharing their stories all of the time. It gives me tremendous pleasure, and more importantly, it keeps me remaining positive.

As I see it, cancer is more and more becoming a chronic illness rather than a terminal illness. The only limitation is how long your health can hold out on all the chemo poison being pumped into you. Would you say that's accurate?

How is your body holding up? Does your doctor tell you how long you have to live?

I treat my disease as a chronic disorder. Chemo side effects sometimes are difficult. I make a point to never ask my doctor what my prognosis is.

How are you doing now?

Just completed chemo and recovering.
Looking forward to becoming a Grandpa for the first time this month!

What's something that's underestimated that you find to be very useful? (Besides memory sticks)

Staying productive, thinking positive, remaining passionate.

What was your initial reaction to learning that you had cancer?

Ninja edit : sorry to be that one guy but if someone did not buy your program and just saved a text document with their medical info on a flashdrive it would be just as effective. Right?

I was recently a speaker for Relay For Life. I think I put it best in the words found at this link:

http://www.myminerva.com/blog/2013/09/relay-for-life-brings-hope-for-cancer-survivors/

As far as keeping a text document goes, I say even keeping your records on a piece of paper is better than nothing, however, it will not be automated or nearly as organized.

What are your views on medical marijuana?

Although I don't use it, I consider myself to be a libertarian when it comes to issues such as this. In other words, it should not be left up to the government.

First off, thanks for taking the time to participate in this IamA session, and wishing you the best as you continue to battle. Also, thanks for helping other folks in similar situations maintain the vital information needed to take the best possible care of them at a time when it's truly difficult to keep track of so much information.

I work in Clinical Informatics and see everyday the usefulness of having the ability to have access to our own medical records. The Meaningful Use initiatives as part of healthcare reform here in the US are really helping in this regard, to ensure that folks do in fact have access to their own medical records for exactly the reasons you mentioned. It's exciting to see how HIE's (Health Information Exchanges) really make a difference when it comes to having the information available from anywhere when you need it most.

Have you tried working with any of the big (or small) EMR companies or even the ONC to give your product a bigger stage? I know they are trying to promote the crap out of the Blue Button, but at this point, anything will help. Since interoperability is such a big problem among the big system, folks can use as much as help as they can get.

Well said. Unfortunately, the big players consider their data structure proprietary and do not like talking to one another as a fight to make their systems become the standard. We use an open architecture and are willing to talk to any of the electronic medical systems that are willing to talk to us. Hopefully someday there will be an acceptable standard accessible to all. Until then, it's best that we take responsibility to keep our health records safe, accurate, and up to date.

Would love to continue this important discussion.
You can contact me at [email protected]

[deleted]

Remain positive and you may watch this video that best describes my cancer journey and what I did to overcome obstacles along the way.

https://www.youtube.com/watch?feature=player_embedded&v=C9AnItr5w_Y

Thanks for doing this AMA, Dan. I've heard a lot lately about privacy and medical records or non-medical records that still contain important information (weightloss and exercise apps, for example). I notice on your site that it says "t’s a comprehensive solution that allows you to store and manage your medical and health history in one easy and secure place – your home computer." What type of security measures does Minerva have in place, or are you relying on the user to enforce security on their own machine?

Information stored can be password protected, pin coded and encrypted as the patient chooses. It is also HIPAA compliant. Information that is selected to be unprotected, such as name and emergency contacts, can be selected by the patient.

If you dont mind me asking, do you think that you dealt with the situation well?

A documentary has been made about my cancer journey and published by American Cancer Society and others. You can view my documentary by clicking on:

https://www.youtube.com/watch?feature=player_embedded&v=C9AnItr5w_Y

Warning: A Few Words with Dan Schiavello is an oxymoron. It is about 20 minutes long. Please watch the end and don't laugh. LOL

Do you get a lot of support from family and friends? Also, do you believe its better to have a lot of people positively support you during the cancer fight, or is it more beneficial to face it with internal strength? I ask because it seems believing is very important in fighting illness.

Of course support, not sympathy is an important part of my fight against cancer. I prefer to maintain my independence whenever possible to give me the internal strength I need to remain positive. Although friends and family mean well, they sometimes unintentionally say the wrong things.

The best advice for a loved one of a cancer patient can be found in 2 blogs that I wrote : The Top Ten Best Things and The Top Ten Worst Things to Say to a Cancer Patient. Some of course are more humorous than others. The links to these blogs are: http://www.myminerva.com/blog/2013/12/the-top-ten-best-things-to-say-to-a-cancer-patient/ http://www.myminerva.com/blog/2013/11/the-top-ten-worst-things-to-say-to-a-cancer-patient/

Hi Dan! Your story is very inspiring and you seem like a very strong individual. My question is: when you end up in a position like the one you've been in, does it sort of "force" you to concentrate on living positively or does the thought of mortality commonly occur? Thank you for your time and congratulations on your wonderful successes

Edit: I hope this doesn't seem like a repetitive question.

I tend to focus only on the positive and I have much to be thankful for. Of course, cancer is always on my mind but death is not an option. LOL

I really appreciate the response.; you seem to have a great attitude and wonderful character. Best of luck with your situation and thank you for the reminder to be grateful for life.

Thank you. Best of health to you!

How are you doing now?

I've had significant reduction in my disease. Chemo is sometimes rough, but looking forward to holding my first grandchild, who by the way, will begin organizing her health records at birth!

Congrats on your grand child!

Thank you. By the way, Minerva Health Manager automatically creates a legacy to pass along to other family members. My granddaughter will have access to important genetic information about me.

Do you wear a medical alert ID listing your allergies or any other super key info? Why or why not?

As someone with a rather (unfortunately) complex medical history, I will definitely be checking your program out. I try to make sure all the my docs have key info, but the info hits a certain amount it becomes very difficult. When I end up in the ER it's just a nightmare. I applaud your inventiveness and best wishes. And yay grandchildren!

Edit: added ER line.

In addition to the flash drive, we also have a USB wristband with the same info on it as well as the mobile device apps. Whenever I go to the doctor in a non-emergency situation I print out my health records before I leave. When asked to complete forms in waiting room, I simply write " See Attached". The receptionists usually hate it, the doctors usually love it!

Hi Dan. Is the memory stick secure in any way if it were lost or stolen? I'm assuming there might be information on there you wouldn't want a stranger to see?

There are 3 files on the flash drive. The first is unprotected and can contain as little information as your name and your emergency contacts. The second contains usually all of your information, but is password protected and encrypted. These are read only files. The third file is your health database. It is password protected, pin coded for each family member. It also requires Minerva Health Manager to make any changes

How much strain has this put on the relationship you have with your family? Can you see a difference in the quality of the relationship significant other/children/parents/siblings?

It can be stressful. In many ways it has brought us closer together. I try to show them by example the quality of life.

What were your symptoms?

Originally a lump on my leg. Other symptoms were worse from the chemo than from the disease. Of course, surgery to remove part of my lung is not exactly fun but I continue to be winning my battle against cancer.

Why did you not release the software as open source?

There are obvious quality control, quality assurance issues for doing so. Releasing the source to interested parties is always an open topic for discussion.

Hey, how's your day been going so far?

As a first time reddit user, helping others and participating in this discussion has been a positive experience.

Do you practice any alternative therapy?

Yes, such as massage therapy, participating in things I am passionate about such as sailing, helping others, laughing, and of course, listening to my theme song STAYING ALIVE by the Bee Gees!

If you would like to hear more about my journey, please click on the link below:

https://www.youtube.com/watch?feature=player_embedded&v=C9AnItr5w_Y

Also, please read the blogs that can be found at www.myminerva.com

Have you ever tried or considered marijuana as a treatment?

Never tried it before, after, or during treatment. Haha! However, I am not opposed to it being a form of treatment.