Call for Blogs on Healthcare Literacy Part 2

Yes, I did promise this. Here goes – I need help! I am looking for people to help on a blog project. Since we do not have a National Health Literacy Day, maybe we should support Helen Osborne and her health literacy month of October. I am not concerned if we call it health literacy month or healthcare literacy month. Both seem applicable and appropriate. Maybe there could be a World Health Literacy Day within the month of October.

In addition, since this is December 2012 and we have until October 2013 (actually September 2013) to get topics ready and pick a few topics for the month for blogs. For people in the Diabetes Online Community (DOC), we will want to emphasize diabetes literacy. Now for the more complicated part, if you like this, I could use help contacting other people with chronic diseases to bring them into this, and expand this to all bloggers throughout the world. This is how important I feel this could be. In addition, people could blog in their own language. This would make this usable to more people as not everyone reads English.

Each disease could have their part to contribute to health literacy month. No, I am not suggesting a blog every day, but maybe one blog per week on some facet of health literacy. This would mean approximately four blogs from each blogger for the month. Picking the different topics within health literacy is also an area I will accept help as I am not the most organized when it comes to this.

I had hoped to have correspondence from Helen Osborne by now, but I have heard that she will not be available until late December. I am hoping for some answers and guidance at this time. I will still put some of my ideas out to see if there is support for any of this.

A few of the topics that I have thought about include:

1. Working with knowledgeable doctors in each disease to have community meetings to discuss terms common to a disease and give the meaning in terms everyone can understand. Even if this were only in the month of October would be a good start.

2. Find community organizations that exist and have them put on a meeting and invite a doctor specializing in that disease. Example: There is an organization that meets monthly in my community on Parkinson's disease.

3. Contact town or city officials and find out if there are any groups they are aware of that are meeting some of the needs of people with literacy problems. Literacy problems will also be health literacy problems.

4. Contact the local YM or YWCA (if your community has one) and see if they work with literacy problems.

5. Consider establishing a health literacy group and recruiting people to assist people that are willing to accept assistance when meeting with doctors, so that you may explain things to them that they may not understand.

6. Study literacy and health literacy discussions on the Internet. Example: The Agency for Healthcare Research and Quality (AHRQ) site has some useful information available and is one of 12 agencies under the Health and Human Services (HHS) department that works for improving healthcare. They do publish an excellent brochure about safe medicine use. I picked up my copy at my local pharmacy. There are other websites and some excellent blogs about health literacy.

I am open to most any suggestion either in the comments area or by email – see my profile page. Another source of information is this website.

Helen Osborne has several other websites and this is one of them. The Institute of Medicine has an excellent article on health literacy and I have written about some of the topics that health literacy can have an effect on patients, here and here.

Call for Blogs on Healthcare Literacy - P1

I know that I need to bring this to everyone's attention. I started getting ideas when I read this blog by Nancy Finn. Right topic and the discussion is needed about health literacy or as she says – healthcare literacy. This is an area needing attention since it affects about one-half of the US adult population. After reading Nancy's blog, I did a search for National Health Literacy Day hoping that I might find something. Nothing for health literacy was located. There is a literacy day in the world that is organized by UNESCO and it is on September 8 of each year. It began in 1966. In 2007 and 2008, the emphasis was on “Literacy and Health.”

While health or healthcare literacy depends on literacy, I could find nothing for a National Health Literacy Day. I did find something about Health Literacy Month, but this was started by Helen Osborne and does not have national recognition. She is trying to have the month of October as health literacy month. There are minimal efforts by a few others, but nothing that is getting recognition.

Other than a few people blogging about health literacy or healthcare literacy, why is this not a topic for more earnest discussion and a wider topic for blogger efforts? True, without the medical professionals participating, this will be a very one-sided conversation. The professional organizations are putting out information to encourage physicians to work to improve communications, but most doctors are so restricted in the time they have with patients that health literacy takes a back seat. Somewhere in the conversation, there has to be an answer. Is it going to require volunteers?

In some hospitals, there are people designated to talk with patients being discharged to make sure they understand all instructions and can repeat them back. When the patient is unable to talk, normally a family member must be present or a friend that can or will be assisting in the care. They in turn must be able to communicate with the person doing the discharge for the patient. Most doctor offices do not have the financial ability to have someone on staff to deal with this, although this should be made part of office staff positions. Even doctors working for the hospitals do not have anyone that is available or capable for communications with the healthcare illiterate. So, in many ways our broken healthcare system does not care about patients that are not health or healthcare literate.

Another problem seldom mentioned is the problems with patients that lack healthcare literacy. Most are very proud people and do not want assistance even though they do not understand what the doctor has told them. Some will reach out for help and are totally ignored by the doctor's staff. I saw this happen one afternoon in the hospital doctor's complex. An elderly man was asking what the papers said that he was handed by the doctor. The nurse just said he was done with his appointment and he should leave. He turned toward me with tears in his eyes. Since I was done checking out after my appointment, I asked the person behind the counter if he had checked out and she said yes. I asked him if I could help and he handed me his stack of papers – six in total including two prescriptions. The nurse saw him hand the papers to me and came over and took them away from me and ushered him out while scolding me that HIPAA prevented me from looking at his papers. HIPAA means the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

I, of course, knew something was wrong and had correctly guessed the person could not read. In the hall outside the office complex, the man turned to me and said, “I can't read.” I asked him how he had gotten here and he said a neighbor had driven him and would be waiting in the car for him. We agreed we should tell this person and we went outside. The neighbor saw us coming and came toward us. I explained what had happened and we needed to go back in and I was going to take them to an office where I knew we could get help. When we arrive at the office, I explained what I had been told and that the person could not read and was asking for help to understand what all the papers meant. I explained the attitude of the nurse and what she had told me. I saw from a look on the secretary's face that she was upset that this had happened. She immediately called her boss and asked him to come out of his office.

When he saw me, I could see him cringe. The secretary said this was something he needed to deal with immediately. I repeated everything and the person said he did not know how to read and was just trying to understand what the papers were saying. His neighbor said who he was and that he did not even know this, but that it explained many things. He said that he would be able to take care of this when he understood what the papers were all about. The administrator looked at me and said, “you brought me a problem that needs being taken care of and I will.” I said thank you to him and turned to leave. Before I had completely turned, a strong hand grabbed my arm and I found myself in a bear hug. The man was crying and trying to thank me at the same time. His neighbor said that now that he was aware of things, he would not let this happen again. The administrator said that he would see that the papers were understood and discuss with them other papers that may be needed to allow the second person to be present at future doctor visits. He also stated that the nurse would be made aware of the correct HIPAA rules and also of the problem she caused everyone.

That evening I received two phone calls. The first was from the administrator to let me know that the situation had been resolved and that the man's wife had always covered for him, but had died the previous month. He said that they would be getting papers to allow two people to be present at all doctor visits, as his neighbor could not always be present. He also said that he had given my number to the neighbor so be expecting a call from them. He had also given them my name and then gave me their names, which I did not have – just their nicknames. As it turns out, even the doctor was not aware he could not read, but now does. The administrator said this was a good lesson for all doctors and that all had been made aware of literacy problems as well as healthcare literacy.

Yes, I did hear from them about half-hour later and the elderly person is not that much older than I am, but had never been in school as he had been overseas during his youth and his parents did not believe in school. He explained what the administrator had told them about me and what a pain in the backside I could be, but this was one time I had done the right thing. They both thanked me for being concerned enough to want to help when I could have walked away. I just said that when the nurse said what she did, it made me angry and I would have helped for sure then, as many use HIPAA as a defense for too many things. I said that once he had handed me his papers, he had made a choice, and HIPAA no longer applied. Both said the administrator had said this as well, but appreciated that I had brought them to him. The neighbor said the administrator told both of them to report any problems caused by staff about either of the two people that would accompany him. I said to make sure they did. They both said that now that they knew where the office was and how he was treated by the administrator, he would not be hesitant to stand his ground.

I did learn one thing that is important to me. I knew there are people that cannot read, but had not realized that I would ever be helping one.

The blog tomorrow will have further information and a request.

The Future of Health Care May Be Primary Care

Dr. Mintz has a well thought out blog and I commend him for that. I realize that he is writing about something that is near and dear to him and that he is passionate about. I am sad to disagree in part with him, but my side is from the patient side and I need to express my thoughts accordingly.

Dr. Mintz is one of a dying breed of doctors. He is primarily involved in the world of academia since he teaches medicine. He makes valid points in his three areas used to declare primary care is the future of healthcare.

1. Primary Care is High Value Care.

2. Primary Care is Critical in Reducing Waste.

3. Increasing Technology and Access to Information Requires Navigation and Experience.

There are several points that he has made in prior blogs that invalidate his points. First, with the present and increasing shortage of primary-care doctors, how can primary care become the future of healthcare? The American Academy of Family Physicians (AAFP) wants us to believe that they are, “Ensuring a Quality, Physician-led Team for Every Patient.” They claim, “The U.S. is moving to a new primary care model built around patients and delivered by teams, known as the Patient-Centered Medical Home (PCMH).” Unless they can turn the tide of doctors leaving the primary-care profession and encourage more students to enter the primary-care profession, what Dr. Mintz is saying will have no meaning.

There will not be enough primary-care doctors to provide leaders for the PCMH. In addition, they are cutting off their own hands to see that others do not lead these teams. Nurse practitioners (NPs) are capable, but the AAFP does not see this and strongly opposes this happening. The Institute of Medicine (IOM) disputes the claims of patient safety concerns by the AAFP and labels them unfounded. In fact, the IOM says NPs are on a par with primary-care physicians. The arguments set forth by the AAFP continue – lack of training, lack of experience, nurse shortage and others. Even the other medical organizations are stating positions against allowing NPs to head up PCMHs.

An important fact that many are overlooking may be the best argument for allowing NPs to be in these positions is the cost savings. “There is evidence that primary care by nurse practitioners is less costly because they tend to order fewer tests and expensive diagnostic procedures than do physicians. Thus, there still may be cost savings from nurse practitioners even if they are paid on a par with physicians for the same services.” Considering the previous statement, we need to wonder if primary-care physicians are a small part of the $750 billion waste in healthcare spending.

Then we also have this to consider, “In addition, some observers argue that physicians are overqualified for some of today's primary care work, which can involve routine physical assessments and ongoing care rather than diagnosis and treatment of complex conditions.” This could also be a strong incentive to give nurse practitioners an increased role in the primary-care arena.

Please read my blog here that contains other information on nurse practitioners.

Did You Receive The Correct Diabetes Diagnosis?

If you agree that newly diagnosed patients do not always receive advice on managing their diabetes, including testing information read my blogs here and here. Then you need to wonder if patients are receiving the correct diagnosis. The disturbing factor is the misdiagnosed patients are not reported to any database. Often it is the patient, the doctor, and maybe a few family members that ever know about the misdiagnosis. Yes, the insurance carrier knows, but they generally will not release any information. This should be a concern for any newly diagnosed patient. The lack of a diabetes database and a database for improperly diagnosed diabetes patients allows doctors to continue without problems or even a review by state practice boards.

This is disturbing because this includes all forms of diabetes, type 1, type 2, LADA, and MODY. No one can say what the actual numbers are and that is the shame for people with diabetes. How can we put trust in the medical community that wants to keep this buried? Until states and the federal government establish these databases and make reporting mandatory, this will continue to be a problem. Doctors will have no incentive to be more careful in their initial diagnosis. These databases will also need to available for review by diabetes patients to report incidents of misdiagnosis for confirmation. These databases could also be valuable for other doctors and diabetes patients to determine the number of misdiagnosed patients by doctor to discover reasons to question a diabetes diagnosis by the doctors with large numbers of these patients.

As I explained here, diabetes diagnosis is not as cut and dried, as many would think. I talked about many of the tests in this blog and it never hurts to review them. “Can the A1c be used initially to screen for diabetes? Some doctors do use it for screening. Other doctors prefer a fasting blood glucose (FBG), the oral glucose tolerance test (OGTT), and the A1c before they will diagnose diabetes. Another test in the diagnosis arsenal is the fasting plasma glucose (FPG) test. Still other doctors will use other tests to make sure it is type 2 and not type 1 or LADA. The C-peptide is also used to determine insulin resistance or the amount of insulin your body is producing. Levels of autoantibodies to insulin and the beta cells can be of some value but even these do not lead to an airtight diagnosis. This is because not all people with type 1 have these antibodies. Therefore, the diagnosis is still largely a clinical one.”

I will also refer people to this website lab tests online dot org for a list of tests used for diabetes. This has a discussion of - tests for screening, tests for diagnosis, and tests for monitoring. I would urge people to know the different tests and what their doctor used for their diagnosis. Not covered is the tests for maturity-onset diabetes of the young (MODY) as this is a very specific and sometimes expensive test. Information on MODY can be found here and the six types of MODY are listed in a chart near the bottom of the page.

Most cases of misdiagnosis are people with LADA being initially diagnosed as type 2 diabetes. These are the majority of cases we hear about, make the evening news, or the morning papers. This blog on the Joslin blog site is one of the better discussions about the problems of correct diabetes diagnosis.

The next area of misdiagnosis in MODY being diagnosed as type 1 diabetes. I have blogged about some of the problems here and recommend you explore this site. What is even more of a concern is how some doctors feel about diabetes. I had one doctor (not one of mine thankfully) make a blanket statement that diabetes is diabetes and there in one simple treatment – give the patient insulin. He then continued it does not matter which type of diabetes the person has – insulin can treat them all. When he was asked by another person about people not needing medications or that could get off medication, he said if they had diabetes, all they needed to do was adjust the amount of insulin they injected. Other questions were asked, but the doctor was not budging from his pronouncement.

Type 2 and Insulin Use

Carla Cox, PhD, RD, CSSD, CDE starts off her blog on the American Association of Diabetes Educators (AADE) website with something that truly surprises me. All I can say is thank you Carla. I have been fortunate never to have a provider (doctor) say what makes her want to scream. Believe it or not, it was a certified diabetes educator that said, “If you cannot control your diabetes better, you will have to be put on insulin.” This was in the month following my diagnosis and I was still figuring out what I could eat and my numbers were still generally above 250 mg/dl. When this was said, I got up, and said that may be necessary, but your way of stating this sounds like a threat from someone that does not understand diabetes as I went out the door. I did not understand then how correct I was, but I found out over the next few months that this person did not really understand diabetes and was terminated for her attitude.

I did call my insurance company when I got home and explained what had happened and how long I was in the room with her. I was told that I was not the first to complain and payment would reflect the short time and lack of education. October 2003 was the month of diagnosis and this was about mid-November. I did see my doctor mid-December and he was concerned that I had not reduced my blood-glucose readings more. He had me rescheduled for late January. He suggested that I do some research on insulin. No, there was not order, just a very polite suggestion.

I knew by the middle of January that I would be better on insulin and had read two books and done a lot of Internet reading. I had the blood draw and the doctor was ready to see me. I said the test results would probably be late and he said yes. I said he was welcome to look at my recorded results for blood glucose readings and that I should be using insulin. My readings were still generally over 150 mg/dl. He said he still was not sure, but that he would talk to the person and get me started with some education while waiting the test results. I said I would not meet with the person I had before and he said she is no longer part of the office and he felt that the RN would be able to gain my confidence.

I must admit he was right. The first question she asked me was what I knew about insulin. I opened my briefcase and showed her the two books and said there were many types of insulin and I wanted to stay away from any mixed insulins. I would probably need a 24-hour insulin and a fast or rapid acting insulin. At that point, the doctor entered the office and had the test results. My A1c was 7.1% and my lipid panel was within range. The doctor said I should probably stay on oral medications for a little longer. I said I am tired of being overly hungry and fighting to bring my blood glucose levels down and being even hungrier. The RN spoke up and said that with the knowledge I had already that I should be on insulin. We talked for a few minutes longer and he pulled out his prescription pad and wrote several prescriptions. He instructed the RN to give me one of the better meters and for me to stop using the one I had.

The next 45 minutes with the RN were intense and rewarding at the same time. She gave me the starting dosage for Lantus and Novolog after doing some calculations. She anticipated my questions and showed me how to calculate and refine adjustments over several weeks as needed to get me to the levels I had expressed wanting to reach. Then we covered the correction ratio for correcting readings that were higher that desired before a meal. She carefully wrote out all the calculations and what to do to adjust the dosage to get near the readings I wanted. Then she had me walk through several calculations. This was a great learning experience for me and I still have the calculations. This fit my learning style – observe and then do – and I remember how to do this today.

Then she said it was time to scare the dickens out of me and I said like hypoglycemia. She did a double take and asked where I had read this. I pulled out the book (the second in my list here) and showed her the tabs I had created on post-it paper. She looked at the area I had marked and stated, “You do know then.” I said she had not read far enough to read some of the tips to correct hypoglycemia and what not to do. She said if you know that now, I don't need to cover this. She did take time to look at many of the tabs I had marked and then she went to the copier and copied the cover of the book. I told her where I had purchased both books (including the first on the list) and she said she had not seen either of them and wanted to read both now that she knew of them.

Next, she wanted to talk about reading labels and I hauled out my third book and a cookbook. She asked what I had learned. So I showed her the labels I had put in the book from different foods and explained that I had a scale to weigh things if necessary. Next, I opened the cookbook (Betty Crocker's Cookbook, ninth edition – ring binder)) with the nutrition information with each recipe and said I look at the number of servings in the recipe and multiply the carbohydrates by the number of servings and divide by the number of servings I would be using. She said I understood better than most and I thanked her. She did suggest a carb counting book that I had not heard about and we covered a few other pointers she wanted to cover.

She commented how much she wished others would work to understand diabetes and investigate insulin like I had. I said that not everyone has an interest and many do not want to talk about diabetes. I said I had gone to several bookstores and several places on the Internet looking for books, especially after the doctor had politely asked me to learn about insulin. She made sure I had the telephone numbers for my doctor and how to contract her or her associate if I was having problems. We did exchange emails a few times and she would give me new book titles that she thought I might be interested in.

About a year later, I lost contact. I have met a few CDEs outside of an office setting and had enjoyable experiences. In an office setting, I have not had an experience I wish to repeat. I am very surprised and appreciative that I had such a pleasant experience with a registered nurse.

I have to wonder as most of the cookbooks since then no longer have the nutritional information included especially the hardbound editions. In looking through the bookstore a week ago, all of the hardbound and paperback cookbooks do not have the nutritional information included. This store does not carry any of the ring binder versions.