Do People with Chronic Illnesses Use the Internet?

Yes, they do! Many are not as social as many of the younger generations, but many of the elderly do use the internet. Granted the numbers are not as large as the younger generations, which takes some of the luster off the comparison.

Chronically ill people tend to be older and not as well educated. Add to this that they're less likely to be working and it is easier to understand why they have smaller numbers.

Last week I was searching for an economical printer and I met two other people looking at printers. One fellow was a World War II veteran and he was very knowledgeable about what he was looking for. The other person was about my age and was asking all kinds of questions. Both had computers, but needed to obtain a new printer as the one they owned had quit working. All three of us settled on the same printer, but I wanted my wife to look at it before purchasing.

Susannah Fox and her colleagues at the Pew Internet and American Life Project have found that once connected to the web, there is a difference in usage. This found that in California, adults living with chronic disease are significantly less likely than healthy adults to have access to the internet:

• 81% of adults reporting no chronic diseases go online.
• 62% of adults living with one or more chronic disease go online.

People managing multiple diseases are less likely to have internet access:

• 68% of adults reporting one chronic disease go online.
• 52% of adults living with two or more chronic diseases go online.

The surprising information is that the people with internet access become more engaged with their personal health information. They are more apt to self-track observations such as weight, diet, sleep, and exercise, plus their medical lab results.  Many do not track this information electronically, but in the form of hand written notes.

Some of the interesting statistics to go along with the information is in relationship between those with chronic illnesses and healthy people.

• Specific medical treatments (53 percent vs. 41 percent)
• A drug you saw advertised (20 percent vs. 13 percent)
• Drug safety or recalls (21 percent vs. 15 percent)
• Medical test results (18 percent vs. 13 percent), among others
  
  
  Those people with chronic illnesses normally start their searches with health-specific sites such as WebMD (20 percent vs. 12 percent). Free websites are utilized far more frequently than those that charge for information access.
  

• 80 percent encountered a pay wall (charge for access) and then tried to find the information elsewhere
• 17 percent of people gave up
• 2 percent eventually paid the fee

Not mentioned is the people that figure out how to correspond with the study author or the correspondence author from the abstract information and obtain the information free.

Is Technology the Way to Health?

Are you a fan of mobile apps? Do you feel the need to have the latest gadget? Admittedly, I do not and I will try to bring some points out that may help your thinking about your decisions.

I am not the only one interested in this. Dr. Leslie Kernisan who blogs here and here writes about devices and apps and how most are not helpful. The blog that started my thinking is this one by Jane Sarasohn Kahn on Center for Advancing Health. She attended the 2014 Consumer Electronics Show (CES). Her main emphasis is on the fashion and function of the apps and wearable devices. This is not what I am looking for and I am more interested in function and not fashion.

I would like to add another doctor that blogs about mobile health apps and that would be Dr. David Lee Scher who blogs here. His blogs are on my reading list and often have some points in common with Dr. Kernisan. Why am I pointing out the different blogs? I think anyone interested in mobile health apps needs to have sources to help them make decisions.

The following are a few of the things I look for in mobile health devices and mobile health apps:

#1. Interoperability Presently there are very few that operate with another device or app. This is the biggest weakness of devices and apps. Most companies are financially competitive and will not share protocols or allow other devices or apps to capture data from their devices.

This stops me from purchasing devices or apps. I make enough entry mistakes with numbers that I refuse to own a device or app that does not operate with another. Some can call it being lazy, but with the errors I can make, I would not want this error to go to a doctor.

Yes, I must record the blood glucose readings from my meter and enter the data on paper, but I use extra care. Now that I have the program for pulling the data from the meter to my computer, that is no longer a concern.

#2. Is the device or app immune to being hacked? After learning about the activities of NSA, what happened to customers of Target, and other retailers, this is a concern for me. I don't need my data from mobile health devices and apps subject to other people's use. It is bad enough that the computer systems of doctors, hospitals, and insurance companies are hacked on a continuous basis.

#3. Is the design clunky and difficult to use? With the sleek and usable designs in other devices, even if you don't care about fashion, everyday use must be satisfied and if the device or app does not allow for efficient use, it will end up on a shelf or in a drawer not being used.

#4. Does the device or app help solve a problem or provide a solution? Technologies do not operate in a vacuum. Most mobile health technologies involve education and some knowledge. Make a device or app too complicated for use and it won't be used.

#5. Will insurance provide assistance with the cost of the device or app? I don't know what the new policies obtained for 2014 and later will cover, but before the start of 2014, some insurance companies were reimbursing partial costs of some devices, especially those the doctors were prescribing even if they were available without prescription.

The technologies of today, may be the microchips of the future. I can believe this as these would require microchip readers that could retrieve the data when held in close proximity to the microchip. Then we would need to worry about who had readers for the microchip. Technology provides all sorts of theories for concern and some for amusement.

Technology may be the future and could help in the path to better health if utilized properly and the devices and apps start working together for better utilization.

Thoughts for Doctors and Patients

When a doctor tells you that you are the patient and let him do the diagnosing, what do you say when he ignores a symptom that won't go away. You have answered his questions to the best of your ability, but yet he doesn't act as if he has heard you. The nurse tells you that she can see you tense up when the pain gets worse and you hear her tell the doctor, but yet he does not get concerned and orders more tests.

This generates resentment and mistrust of the doctor. I don't like these situations and after several months of reading, I would like to offer some suggestions to the medical community and to other patients.

Suggestions to the doctor:

#1. Listen to the patient. Many doctors only half listen and studies have shown that most doctors interrupt after about 18 seconds. Often this cookbook style of medicine can work, but when you don't have all the facts or complaints of the patient, you may miss something important. This leads to costly mistakes and mostly a misdiagnosis. If you have a drama queen/king, you may need to remind them that you need concise facts and not all the extras they are giving you.

#2. Communicate with the patient. No, I am not talking about patient engagement. Most doctors talk at the patient and this leads to mistrust. Many doctors wonder why the patient has tuned them out. This is because the patient wants to be considered as a human and many desire to have a part in their own treatment decisions. Doctors that refuse to do this, often have one-visit patients. Doctors that have honest conversations with their patients find that they have more patients and better patients.

#3. Ask questions if something is not clear. Often patients are nervous and are unable coherently to explain everything. This is when the doctor needs to asks questions to bring out clarity. This is when a doctor's skills are tested and communication skills can be a real asset.

#4. Ask if the patient wants to hear bad news. Good doctors will ask first before giving out bad news. The answer received will often disclose the mindset of the patient and the answer may need to be modified to get the bad news understood. Doctors that just blurt out the bad news also can lose patient trust when the patient does not understand the news.

#5. Learn about the patient as a person. This will not only raise patient trust, but will result normally in a patient that listens more carefully to what you say. Too many doctors just treat patients as an asset to bring in revenue. Then the doctor wonders why the patient misses appointments and tunes you out during the appointment.

#6. Ban other doctors (and nurses) from sitting in on an emotional conversation. Too many doctors want witnesses on hand during these times. They are practicing defensive medicine and don't want the increased risk of a lawsuit. Often the patient will sense this and end the conversation. This is when trouble is most likely. Often patients can be emotional when receiving the bad news diagnosis and do not want witnesses other than the doctor giving them the news. Believe it or not, often during an emotional conversation, patients ask the best questions, expecting honest answers. When they don't receive honest answers, this is when trust goes in the crapper.

Suggestions for patients:

#1. Don't be a drama queen/king. Keep to the facts and what you know to be happening. The doctor may be more inclined to believe the facts as you know them when not mixed in with the drama. Remember that the doctor has limited time for each patient and your drama may make you feel good, but will not help the doctor make a better diagnosis.

#2. Try not to let the doctor cut you short. This will take a lot of polite maneuvering

or tact to finish giving the facts, but do take the opportunity to finish. When a doctor interrupts, make sure that he is asking a question that is relevant and that he needs an answer. If the question is relevant and he continues asking questions, you may need to abandon your facts. Do try to complete the facts once he has his questions answered.

#3. Answer the doctor's questions to the best of your ability. Do not wander, but stick to the facts as you know them. Keep your answers as concise as possible.

#4. See the correct doctor for what ails you. Sometimes is will be necessary to see a primary care physician (PCP) to get a referral to another specialist. Many PCPs will refer you to the correct doctor. Be wary of a PCP that thinks he is the only doctor you need. A couple of times I have had to see another doctor for a referral when my PCP did not think my symptoms were bad enough and getting the proper referral did prove the PCP in error for refusing a referral.

#5. Do not be afraid to ask a question or question the purpose of a test. At best, this can be daunting for the patient, but sometimes this is necessary. A doctor that refuses an answer requires a patient to be overly cautious and sometimes fearful that the incorrect test may be done.

#6. Do not put up with a doctor that tries to bully you into something against your ethics. Most doctors will respect religious ethics; however, some doctors will use the bullying tactic to get their way. Learn to avoid these doctors and change doctors when needed.

These are for your information and I hope some value to you. Use or adapt them to your needs.

How Much Knowledge Is the Right Amount?

As a person with type 2 diabetes, I have always questioned this. This is the second blog I have read about this and I cannot find the first blog as the site no longer exists. Therefore, it was with great interest when I read this and made me determined not to let this one get away.

I don't know if I agree with the title Jessie Gruman used, but I definitely agree with most of what she wrote. She is a little overly optimistic about most professional health care stakeholders. She says they believe that the more we patients and caregivers know about our health and diseases, the better our outcomes will be – and at a lower cost!

I could agree if I had not met so many doctors that believe they are all the patient needs and will not discuss treatment plans with their patients and instead give out orders that they expect the patients to follow and not ask questions. These doctors do more to discredit their profession than anything else – not the mistakes they make, the misdiagnoses, the harm they cause patients, and their own ineptitude.

Many patients will do their best to learn and follow doctors that talk with and not at them, help them by providing guidance, and even giving them reliable sources of information on the internet. Those doctors that work with the patient and treat them with respect will generally have patients that will succeed to some degree in applying the best of self-care.

I used the term 'some degree' because there are too many variables and it is very difficult to know if the patient is operating on information overload or lack of quality information. Doctors can misjudge how much we know about our illness or disease. Included is medicine that is foreign to us and we are not privy to much of the processes. However, the doctors are not alone in their overestimation of our knowledge. Many patients and caregivers overestimate their knowledge.

This creates a crossroad for us as patients or caregivers. How much information do we need to better manage our diabetes? I have not had type 2 diabetes for over 10 years and I am still learning. I would have thought that with all the research I do every week, I would have been able to answer more questions. Yet, I had to ask my endo a couple of questions at my last appointment and was totally surprised by the answers. Not even something that I would have thought off and it certainly not what I expected. It made sense after I thought about it.

Even though I understand diabetes better that some of my friends, I still have a lot to learn. Unfortunately, there are so many variables and each can cause different effects and create different outcome. Will I give up – not a chance, but when will I know enough? This is my biggest puzzle and I will probably continue to learn.

All of us need to avoid the common assumption many patients make of “more is better” and realize that often less is better. Still we should learn as much as we want to learn or are capable of learning. We need to know when to question our doctors and when to let them lead.

Is our health care for diabetes dependent on us having some unspecified amount of knowledge that our personal shortcoming means our outcomes will probably be worse? And where does this leave those of us who, out of curiosity or concern, respond to calls for us to become better informed patients? Answer the last two questions to help yourselves.

When Are You Not Getting Enough Medical Care?

It is true that many people are receiving too much medical care. However, many people with chronic diseases/illnesses receive far too little medical care. This has not always worked this way. Until just recently, people with cancer were on the front line of medical care and all stops were pulled out to see that they received the best care currently available.

Today, the reverse is true and cancer patients are being denied care. I speak from experience that two friends have been denied care under their new medical insurance policies required by the law of the land – the Patient Protection and Affordable Care Act, aka ObamaCare. Now I need to wonder how many other diseases will suffer the same fate.

Diabetes has been suffering a similar problem as I discussed in my blog, the medical community turns against people with diabetes. The people with type 2 diabetes not on insulin are beginning to feel the full effect of this. More doctors are not referring patients for diabetes education, not prescribing or talking about people testing their blood glucose, and pushing the more expensive oral drugs on patients.

Another problem has manifested itself in the last few years and this is the activities of the certified diabetes educators (CDEs). Some of their activities have existed for decades, but the lack of good diabetes education for people with type 2 diabetes has accelerated recently. Doctors that are attempting to use shared medical appointments are finding that most CDEs will not participate. These doctors are discovering that they only desire to work with one or two patients at a time and are giving anything but diabetes education. Mandates, mantras, and dogma seem to be their preference.

Three members of our support group are talking about people they know that are being prescribed the SGLT2 inhibitors without consideration for existing renal problems. Their one friend would not be able to take metformin because of kidney problems, yet was prescribed Invokana. This tells us the doctor is not knowledgeable about the medications he is prescribing. They had their friend call his insurance carrier and in turn was recommended to another doctor. When his situation was explained to the new doctor, the doctor immediately told him not to take the medication and asked if he would consider insulin.

Once this was decided, the doctor set about determining the starting dose and informed the patient to reduce the amount of carbohydrates he consumed and to find exercise he enjoyed and could do. The patient said he had not gotten to counting carbohydrates, but he had friends that would help him. The doctor asked who and after hearing the names, agreed and said he would get a good education.

Therefore, when having a doctor start prescribing medications, make sure you ask:

#1. What Do You Think My Best Treatment Should Be?
#2. What Evidence Exists Suggesting This Treatment is Beneficial?
#3. What are the Potential Side Effects?

#4. What are the Contraindications?
#5. Is Watching and Waiting an Option?
#6. What Other Treatment Options Do I Have?
#7. Is There Education Available from Reliable Sources?

Number 5 above is often not an option, but sometimes the answer might surprise you. In the early stage of diabetes and even pre-diabetes, some people are able to manage with nutrition (diet) and exercise.

Joslin Supports Ancel Keys on Saturated Fat

This blog has to have been written by someone with at least a registered dietitian nutritionist title. This also means that Joslin supports a very faulty study done by Ancel Keys in 1956. Again, the Joslin website allows anonymity to prevent the public from identifying the author and possibly understanding the reason for a blog. This is the reason for my calling this as I see it.

So few reputable websites allow this anonymity that when a site like Joslin promotes anonymity, we need to wonder what they are trying to hide. The Mayo Clinic identifies their blog authors and on diabetes information articles will provide the author if asked.  Individual bloggers are identified and are accountable for what they write. Just because the Joslin Diabetes Center is a large organization does not exempt them from accountability.

Joslin does use recent information from the American Heart Association and the American College of Cardiology for pushing for low fat. That information is from November 2013 and does not reflect the study published in the Annals of Internal Medicine in March 2013. Even many cardiology doctors are not convinced by the study and will wait for additional studies before they accept saturated fats as being safe.

The author did make some surprising statements, “Even though countless research studies have been completed since 1997, the message (at least possibly until now) has held strong: saturated and trans fats are the enemy.” Then in the next paragraph the author states, “Other factors that come into play are that, in addition to eating saturated fat, our bodies manufacture cholesterol- the amount based on our genetic makeup- and that the type of studies we can do (observational and short-term intervention) don’t provide proof of causality.”

While the most recent study is favorable to saturated fats, the Joslin blog author takes great care to say that the complex statistical relationships is beyond our knowledge. Whether you believe that many studies have shown that eating mono- and polyunsaturated fat does not cause heart disease is entirely up to you. The author says the same can't be said about saturated fat.

The last sentence above is the reason for my stating that the blog author still believes the faulty study from the 1956 “Seven Countries Study” led by Ancel Keys, who started the demonization of saturated fat. Again and again this study has been refuted, but many in the medical profession and especially registered dietitian nutritionists like to use this as proof that saturated fat is bad for us.

I will admit that I would not adopt saturated fat as the only fat in my meal plan, but if some happens to be part of the food I eat, I am no longer worried that it will kill me. That is another reason that I am a more careful reader of blogs by anonymous Joslin bloggers. While I am using a meal plan that is low carbohydrate/high fat and medium protein, I think moderation in the quantity of saturated fat may be a key.

For a great blog on saturated fat and a second blog on the same topic and mono- and polyunsaturated fat, read these blogs by David Mendosa.

Are Non-Insulin Type 2's Over Medicated?

I ask this question because I feel that the American Diabetes Association (ADA) and the American Association of Clinical Endocrinologists (AACE) are over medicating people with type 2 diabetes that are not on insulin. They are doing this because many doctors do not stay current with insulin and many doctors are afraid of insulin.

This is why many patients are complaining about their doctors stacking one oral medication on top of another oral medication. Some doctors will prescribe up to four or more different oral medications. Many doctors don't even realize the side effects of doing this and many just follow the ADA and AACE and continue adding oral medications.

It is true that some individuals are able to do this without medical drug conflicts, but many become confused and even have episodes of hypoglycemia and other health problems because of this uninformed stacking of oral medications.

Another aspect that concerns me is the fact that the Food and Drug Administration (FDA) has not approved many of the oral diabetes drugs to be used in some combinations. Some combinations are relatively safe for many individuals, but unsafe for other individuals. Yet doctors continue to prescribe these unproved combinations willy-nilly and when patients have problems, blame the patients.

Even the AACE algorithm shows adding medication on top of medication. All show oral medications and recommend them before insulin for type 2. Some recommendation is made for insulin when HbA1c is above a certain level. However, many doctors do not even consider this.

The doctors do not know insulin or how to administer it. They are literally afraid of hypoglycemia and therefore keep pushing oral medications. Some doctors will use insulin as a threat and tell the patient they are failing to manage their diabetes on oral drugs. Most patients realize the need for insulin before their doctors do and are castigated for asking about or for insulin.

What are patients to do? Under the new insurance, if you can call it that, the number of doctors is limited and finding another doctor that knows insulin is very tricky. This said, I would still recommend trying to find another doctor that will work with insulin. Even a doctor that is some distance away may be a better choice for your diabetes health. Talking to your insurance company for a recommendation is still a good policy.