Who Owns Your Medical App?

I don't mean you, even if you are the one physically in possession of the app. I am talking about the one that owns the rights to the app or where the data it generates is stored. These may be owned by different companies, both with conflict-of-interest issues. Because I do not own any medical apps, I can only tell you what a friend had happen to him. He purchased the app from Amazon, and started using it. About two months later he received a notice that his insurance will not be covering his condition because he is not following his doctor's instructions.

Now he is confused, as he thought he was doing everything correctly, and he contacts his doctor and discovers he is doing everything like he was told. He took the notice to his doctor who wrote a letter explaining that he is following his directions. Approximately a month later he received another letter stating that his monthly premium will be increasing by what amounts to one and one half times what it had been. The reason given is that his results are not in the range they should have been for the medication he is taking.

Because he has an appointment the next day, he took the notice with him. When the doctor completed the appointment, he showed the doctor the notice. The doctor knows immediately what the problem may be. His doctor asks him if he is using (names the app). My friend said he hadn't told anyone and especially not his doctor. This surprised even me, but it turns out that the application was owned by one insurance company and the data storage was owned by another insurance company. Together they had purchased several apps and storage rights to the data generated.

The doctor said he had several patients that were caught in this system. What the outcome will be, I don't know. Even my friend does not know what will happen. He has receive a third letter stating that his premium will not go up, but is waiting for the next bad news letter.

My friend has stopped using the app and says he will not buy another medical app. His doctor says that in the future, he needs to find out who owns a piece of each app before purchasing it. I am relying on my friend for the information that he provided, but this points out problems we need to be conscious of when purchasing and using medical apps.

Trisha Torrey who writes for About dot Com tells a different concern about the use of data by an insurance company. I would urge you to take time to read her information here. This also points out the need to be aware of where the information generated by the app you purchased in good faith, is being used without your knowledge. I agree that none of us would trust an insurance company with our personal medical data although we have to get claims paid, but they don't need every medical detail generated by a medical app.

In my research and reading, I do read several doctor blogs and blogs by people in health information technology (HIT). Many are talking about medical applications, but only as they relate to integrating the information into your electronic health record (EHR). They have not even been concerned about who else had access to this information. The doctors are only concerned about what they may gain from the health app without expending funds.

The next five to ten years will be very interesting with the proliferation of medical applications. I will be watching to see if we see more of what I have described as I can believe with all the greed that many companies have, we will need to be very careful how our personal data is captured and used. The other area of concern needs to be how well future applications are able to work together and if we can avoid the overly proprietary applications available today.

BG Testing – Use First or Second Drop?

Have you heard about this before? I admit I had not and I wondered what the significance could be. There is more significance than thought and I will try to cover the reasons and considerations. This originally appeared in February 2012, but has been getting some attention on several diabetes forums again. Some are concerned and others are trying to play it down as old news. I have found that old news can be just as valuable for people recently diagnosed with diabetes because they may not be aware of the old news.  On June 15, 2012, the diabetes blog on the Mayo Clinic diabetes page had this blog.

This is a Dutch study and the full text is free at this link. You will need a PDF reader. When they are talking about diabetes educators, they are referring to diabetes educators in Europe. Even these educators give different advice although the majority of the Dutch educators advised patients to wash their hands before testing. To address the different recommendations, they used the following to measure the capillary glucose concentrations. They also compared readings of greater than or equal reading of 10%.

#1. without washing hands

#2. after handling fruit

#3. after washing the fruit-exposed fingers

#4. during the application of different amounts of external pressure around the finger (squeezing).

For measuring equipment, the researchers used the Accu-Chek Compact plus meter with plasma-calibrated test strips (Roche, Almere, the Netherlands). The meter was calibrated prior to the start of the study as well as halfway through the study. No significant changes were observed.

A Speidel and Keller hand blood pressure meter was used to achieve different external pressures. The regular cuff was replaced by a neonatal cuff. One of two available sizes was used depending on the thickness of the finger (Philips, M1866A neonatal disposable cuff #1 and M1868A neonatal disposable cuff #2). This equipment was used to apply standard pressure for the finger pressure we often refer to as milking the finger.

Time interval during measurements were done so that capillary glucose measurements were performed directly following the finger puncture with a maximum delay of 90 seconds between measurements. When using the cuffs, the selected pressure was applied first and then the finger puncture was performed. The two pressures were 40 mmHg and 240 mmHg.

The interesting part of this study is the differences among the educators in their recommendations and then what the patients do in practice. Even more surprising was the number of patients that did not use the side of their fingers for testing.

The conclusions were about what I expected and only one source mentioned what I think many forget in talking about using the second drop of blood. When using the second drop of blood, the lancet must be set deeper, therefore potentially creating more pain in testing to be able to wipe the first drop away and to be able to have a second drop form. The authors do recommend washing hands with soap and water, drying them, and using the first drop of blood.

The authors do recommend using the second drop when washing is not possible and the fingers are not visibly soiled or have not been expose to sugar-containing foods or products. They tell us to wipe away the first drop of blood and use the second. They wisely and with proof from their study advise us not to use external pressure as this creates unreliable results. This applies to testing when the fingers have been exposed to fruit sugars and need to be washed for accurate results.

When using pressure or milking the finger, we need to be concerned about interstitial fluids affecting the results. This is what makes them unreliable. Also by using the second drop, the depth of the lancet can create unwanted pain, but is necessary to obtain the second drop of blood.

Medicare's Obesity Program Has Problems!

I certainly hope that the Centers for Medicare and Medicaid Services (CMS) obesity program is productive for some people somewhere. I had blogged about it here. Locally at least, (in the two cities I have checked on), the program is managed by the Bariatric Surgery Departments. This means that for those of us that are obese, we have to expect attempts will be made to moved us away from the CMS obesity program to the surgery program. Great for their pockets and possibly not good for our health.

I have had two appointments that were unproductive. The first appointment I received for April 30 was a sham. I was told the person I had the appointment with was in surgery and would not be available for me. With that, I was given a second appointment for May 6 and sent on my way. When I arrived on May 6, I was told to pay $120 to get into the program. I had not been informed of this and plainly said so. I was told they had no programs to help with the cost and without the money; they would be canceling my appointment. I was handed a letter and another paper that I was to have received in the mail before the appointment. I have received neither.

I commented that this was an effective way of saying they did not want me in the program. I was again told when I paid the $120 I would be evaluated (for what – I clearly fit the CMS program – maybe this evaluation is to determine if I can be moved to the surgery side) and that was all that could be done without the payment from me. Before saying something else that would not help my case, I left. Now that I have been home and emailed a friend that was planning on being in the program in a town east of Rockford, Illinois, I am still angry. He also is not in the program and had an upfront fee of $180 to pay. He says in talking to another friend in a Chicago suburb, he would have needed to pay $240 before he would be in the program. What the @#!&? He said I was the lucky one with the smallest amount to pay. In addition, I have the longest distance to travel (30 miles) as he only has three blocks which he said he walks.

I say this is not right when Medicare makes no statement of additional fees and yet all three of us must pay varying fees to get in the program. Hopefully some people are not facing this or larger fees to take advantage of Medicare's Obesity Program. It would be interesting to find out from others what fees they pay or were asked to pay. I would sincerely like to know and my email is on my profile page or you are welcome to leave a comment.

Why Won't Some Doctors Prescribe Insulin?

This is one email I have suspected I would receive sometime, but the seriousness of this person's plight really puzzled me. She has been to three different doctors asking for insulin and wants to get off her oral medications. Her last three A1c's have been 6.7%, 6.9%, and 6.8%. She had been on Avandia for two years and then moved to Januvia when Avandia was pulled from the market. She has refused Actos and one other oral medication. She like me is allergic to sulfa which excludes the Sulfonylureas.

Her first doctor said he did not have sufficient knowledge to prescribe insulin and did give her a referral to a second doctor because he could agree with her. The second doctor just said no and until she failed with Januvia, he would not prescribe insulin. She went back to her first doctor and reported what had happened and he referred her to another doctor. This doctor just laughed her out of the office and asked her if she was giving up on Januvia. Like she said in her email, she has not been this humiliated by a doctor before.  When I received her email she had just come from the third doctor who had also said no to prescribing insulin.

I asked her if there was an endocrinologist specializing in diabetes near to her and she answered that she thought there was and would get back to me after talking to her first doctor. I had also asked her if she had been in the military and she was surprised I asked, but said she had been. I asked her if she had applied for VA assistance and she replied she had not. I asked if she knew where her DD Form 214 was and she said at the county courthouse. I told her to get copies of them and talk to her county Veterans Service Officer. Then followed a series of rapid emails as she asked many questions about costs by the VA as she only received social security income.

I said there was no way for me to know if she would have a copay and that she would be notified. I explained that the testing supplies would not cost her and that the total would depend on the prescriptions she needed. She stated that it should be only the insulin and I said that this could be $54 per quarter or less, and she said that made it worth going after. She has since submitted her VA application and is happy with the information she received from the local VA office. With her level of social security she may not have any costs.

She has returned to her first doctor and he is in the process of talking to the endocrinologist and she will receive an appointment with that office shortly. Since she is also an Iowa resident, I know that her county VA officer will take good care of her. She has confirmed this and is thankful I gave a push in the right direction. I have suggested that if she can continue with the Januvia until she receives her VA classification and her first appointment with the VA. She says she will; even with the information now out about Januvia. She says that reading my blog has been good for her and that when she needed help, I was there for her.

Yes, that makes me feel good, but this is why I blog and enjoy doing it. If I am able to help people, this makes blogging even more enjoyable. I know that we will continue to correspond so I may have another blog about her progress.

Our Meeting about the AACE Algorithm

The PDF is currently available here.

Note:  If you have not downloaded the algorithm from the AACE site, you may not be able to now.  In trying to establish links for this blog, I was receiving the following message - "AACE Members can view the NEW COMPREHENSIVE DIABETES MANAGEMENT ALGORITHM FOR TREATMENT OF DIABETES AND PREDIABETES PATIENTS."  along with site address for members.  This tells me that they have been taken to task and many people are unhappy with their algorithm.

Our group had many emails about the algorithm when it appeared and several wanted to have a meeting about it, as they were not following it. Brenda asked how many would be able to attend and then said we should have it at her place. Ten of us attended and with Tim's digital projector, we all had good seats. Max and Rob had the main questions, as they were not following the progress of the algorithm.

Because Tim had requested them to bring a pad of paper and complete beforehand their body mass index (BMI), their ideal weight, and list their other medical problems we were ready to go. Other medical problems include, blood pressure, cholesterol, any of the complications, and comorbid conditions they know they have. I knew that this part could get personal, therefore I opened by saying that I was asking everyone to be honest with themselves, but if they felt it necessary to keep information from the rest of us, that was their business.

I had expected to have someone qualify under the BMI of 25 to 26.9, but no one did without having one qualifier to drive them into the complications side. On that side, only two of us had BMIs greater than 27. Now we needed to look to the last page. I knew then that we had a problem. Except for Max and I, none of the rest qualified for the algorithm. Everyone else had BMIs under 25. Looking at the algorithm, they did not fit the examples or the usage. In addition, all of us were on insulin and that did not compute for the flow of the algorithm. Even Max and I have A1c's below the target of the algorithm. Max's latest is 6.1% and my latest is 6.3%. Everyone else is below 6.0% with Sue having the current lowest at 5.2%.

Okay, I know. The algorithm is for newly diagnosed patients and creates an entry point. Still, this could drive doctors crazy. Even at that, I knew I would have to use hypothetical examples. I selected a man with blood pressure and cholesterol problems with a BMI of 33. I added that his A1c was 9.8% at diagnosis. Moving forward we determined that he probably would fit the “medium” or “high” stage severity of complications. We chose “medium” for the example. This would mean that this person would follow the arrow down and have the MD/RD counseling, and next have the medication therapy.

Since this person had diabetes, the Prediabetes Algorithm is bypassed. At the Goals for Glycemic Control we would need to follow the A1c greater than 6.5% box and this person's goals would be individualized. This is where people were having problems so we continued to the Glycemic Control Algorithm. With the diagnosis A1c of 9.8% and two complications, this person would continue at the far right side. This would mean a weight loss pill, basal insulin (long acting), and two or three oral medications.

Although not stated on this page, point 9 on the last page does verify that this person has three months to improve or go to “add or intensify insulin. What is not said is if this person is able to bring the A1c down below 6.5%, it does not say which direction the person would go. The other factor is the BMI which does not give a clue about what medication factor the person would b e taking.

Point 9 on page 10 of the algorithm is a long point, but basically says everything affecting diabetes is in play. Effectiveness of therapy must be evaluated frequently (every three months) until stable using multiple criteria. This includes A1c, SMBG records including fasting and post-prandial data, documented and suspected hypoglycemia, and monitoring for other potential adverse events (weight gain, fluid retention, hepatic, renal, or cardiac disease). The following is to be monitored, co-morbidities, relevant laboratory data, concomitant drug administration, diabetic complications, and psycho-social factors affecting patient care.

The group discussed this and felt that the person would start on the left side of the algorithm and proceed down that side. And then to the next page for the CVD (cardiovascular disease) Risk Factor Modifications Algorithm. Going through this example cleared many of the questions. The group felt that somehow we were the lucky ones and had been allowed to set our own goals and work toward them with help from the rest of the group.

Allen said that he now understood why I was so negative about the algorithm in my first blog here. Brenda chimed in that she agreed with my first blog and wondered why the authors were so shortsighted in so many areas. John said now he understood why I commented on so many points missing and why the authors are so sure that prediabetes and even diabetes can't be stopped in its tracks and not become progressive. He continued that this is probably the most depressing set of guides he has seen. It is as if they want people to go from prediabetes to diabetes and stuff them full of medications when people are able to manage prediabetes and diabetes and stop taking medications. The authors do not even make allowances for this and left this out of the notes.

Max said they don't even allow for people to switch to a full regimen of insulin like we were able to do. He added it will be interesting talking to our endocrinologists at our next appointment. 

Tim said he would send out notes and thanked me for working with him to get the information captured and into a Powerpoint presentation. Brenda thanked both of us and the presentation really brought home the good points and the not so great items.

Everyone wanted to hear about the projector Tim had used, so the meeting was adjourned. Tim said he had it on loan and that he was thinking about investing in one for himself and using it for our meetings. Brenda asked why the other four were missing and Allen said they had other commitments, but they were going to be sorry after what Tim had used. Tim said he is short on the amount necessary to purchase one for himself, but in another few months it may be possible. He then said that the one he had on loan would be available several more months.

Rob asked how difficult it was to capture the images we had used. I said I have a program that is a few versions older than the latest, but that it works for our needs. I said if someone has something for a program that can be made into images, that I would do it beforehand like I did for this and have them saved to a Powerpoint presentation and sent as an attachment to the person and to Tim. Tim said it does take some time because of all the capture and proofing, so don't wait until the night before the meeting. I told Tim thank you and said that operator inefficiencies are to blame. I used to be able to do this easily, but since that was on a version older than I have now, I am still learning the update. Max asked who had it and I said I would email the information to those that wanted it.

Oh, Say Can You See Healthy Vision Month

Things relating to diabetes are really being promoted during May. Why more was not done to promote for April is disappointing since it was Limb Loss Awareness Month.  This is not on the April list, but Foot Health Awareness Month is included.  Yes, the American Diabetes Association had something on their website, but promoted it was not. Amputations are one of the more serious problems for people with diabetes. On April 29, Diabetes Mine published a blog by Michael Hoskins on diabetic neuropathy. Diabetic neuropathy can be a warning to take good care of your feet and that this can be a precursor to foot problems leading to amputation.

Now that it is May, Healthy Vision Month, the National Eye Institute (NEI) of the National Institutes of Health made sure that this is promoted. At least another serious complication, diabetes retinopathy, is getting attention along with other eyes diseases. Approximately 38 million Americans over age 40 have glaucoma, diabetic retinopathy, age-related macular degeneration, or cataracts. That number is projected to rise to 56 million by the year 2030. The NEI, “Calls on Americans to make their vision a priority by taking the necessary steps to protect vision, prevent vision loss, and make the most of the vision they may have remaining.”

The Joslin Diabetes Center started May with their campaign for National Fitness and Exercise Month in the May 1 blog, and continued with another blog on May 2 and May 3. Apparently this is a Joslin only event and the month is officially recognized as National Physical Fitness and Sports month. Joslin states that exercise has many potential benefits for people with diabetes. The blog emphasizes that, “It can lower blood glucose, improve insulin sensitivity, reduce the risk of heart disease, improve your blood pressure, cholesterol, mood and posture, strengthen your muscles and bones, reduce stress and anxiety, and make you sleep better. But before you get out there remember to track your blood glucose before, during, and after exercise.”

And May is National Bike Month for those that are able to ride. They have a Bike to Work Week May 13-17 and a Bike to Work Day on May 17. The children also get to have their day in a Bike to School Day on May 8. The website has many useful promotions and even a bike month guide. Even if you don't ride a lot, their Ride Better page details the Rules of the Road and commuting tips. Read and follow the rules when bicycling. This is a form of exercise that can be enjoyed by many people with diabetes.

May is also the 50-year anniversary of Older Americans Month. Hooray for our seniors! This year the title of the celebration is “Unleash the Power of Age.” This is to acknowledge older Americans' special abilities and know-how, and encourage them to share these talents. It is unfortunate that the President is cutting funding for the majority of programs that affect seniors and the Centers for Medicare and Medicaid Services is enforcing healthcare rationing on the members of the senior community. Therefore what HHS Secretary Kathleen Sebelius says in her statement seems less than sincere.

This blog started out with only one item from April and one for May.   It has grown as more items needed exposure. I appreciate that many different sources have their favorite, but why don't we use this source for each month and remember them all. This event also needs recognition - National High Blood Pressure Education Month. The people at Diabetes Self-Management blog have a write-up on this.

Orthorexia – The New Eating Disorder

This was a new one unfamiliar to me. In listening to my favorite radio show last Thursday, they were talking about this and I had to listen to the end of this discussion. The discussion was not quite what I expected and orthorexia nervosa was explained as vegetarianism to the extreme. Also mentioned was the cutting or elimination of entire food groups from your diet such as poultry, red meats, dairy, whole grains, and several other essential foods.

Upon conclusion of the program, I returned to my computer and did a search on orthorexia. I could not believe that the Academy of Nutrition and Dietetics had the lead article. I expected some of the sources, like Fox News and the MayoClinic, but there was more information from many other sources. From this, I would expect many more to be added in the coming year, as more is uncovered about this eating disorder. It is unfortunate that women are taking the brunt of the criticism, but there may be a reason.

I have not found a standard definition, but this is from Wikipedia - “Orthorexia nervosa (also known as orthorexia) is a proposed eating disorder or mental disorder characterized by an extreme or excessive preoccupation with avoiding foods perceived to be unhealthful. The term orthorexia derives from the Greek ορθο- (ortho, "right" or "correct"), and όρεξις (orexis, "appetite"), literally meaning a correct diet. It was introduced in 1997 by Doctor of Medicine Steven Bratman, to be used as a parallel with other eating disorders.”

This needs attention and like anorexia nervosa, orthorexia is a disorder rooted in food restriction. Unlike anorexia, for othorexics, the quality instead of the quantity of food is severely restricted. The bold words are the distinction and why this disorder is very dangerous to the health of the people with this disorder.

Unlike many eating disorders, therapy and/or severe intervention often including hospitalization may be required. Yet many of these preventive measures are ignored because this disorder is not yet on the radar of many physicians and therapists. I wish the doctor on the radio program had been more specific about the organizations that are promoting this disorder with their advertising as the list was quite extensive and the one I recognized is one of the animal activist groups, PETA.

For people with orthorexia, some of the signs are they will not eat out at restaurants, very picky eating at a family gathering. This is because unless they have prepared the food themselves, they consider the food as not pure and they exhibit extreme anxiety eating food that others have prepared. Orthorexics often have a lot of knowledge about food and food science, but this knowledge is not accurate and is often only part of the information that they concentrate on.

I urge people to become knowledgeable about orthorexia, as many will accidentally come across these people and some of them will be people with diabetes.