I need your help...

Hello everybody,

I want to briefly introduce myself, and ask you for your help on something.

I am Bastiaan Franssen, born in the Netherlands, 27 years old and 26 years type 1 diabetic patient. At the moment, I'm studying Health Informatics at the Swedish Karolinska Medical University. Health informatics is a rather new field in which we try to incorporate IT technology in the various settings of medical care. In the last year of our program we need to do a master thesis in the field of medical informatics, and I've chosen to pick a subject that is personally related to me as well. Diabetes.

Diabetes has been a great drive for me, instead of seeing it as a burden, I'm trying to use my knowledge in IT to make a difference for other patients suffering of diabetes out there. That's why I started going to med-school. My thesis is focusing on the integration of MOOC (massive open online courses, such as Coursea, edx, etc) into the education of diabetics. That's why I would love to ask patients all over the world whether they could participate in a survey about their needs and expectations of a educational system based on MOOC.

I was wondering, could you please help me with this by filling in this questionnaire: http://goo.gl/forms/cVbbkWgJiR. The survey takes about 10 - 15 minutes and is fully anonymous. Your help with be of an tremendous support in my thesis, and perhaps your input could help me develop an educational platform for everyone who needs to get proper education on their disease, whenever and however they want.

Cheers and thank you for considering helping me,

Bastiaan Franssen


M.Sc | M.Ph. | M.D. Student Health Informatics
Karolinska Institute Stockholm & Stockholm University

Randburg said:

Done

Click to expand...

Thank you so much for your input!

graj0 said:

Done, but some questions didn't have a suitable question. As the information that I received from medical sources has been so poor, I'm not going to be interested in anything that merely reflects the current thinking, which for me hasn't done me any favours.
The major bone of contention has been the amount of carb I should consume, if I had followed the guidelines being handed out I'd be on insulin now. As it was I lowered my carbs and threw away two drugs I was taking for diabetes. No brainer, advise was bad.
Nearly forgot, all the very best with your studies.

Click to expand...

Hi Graj0, thank you so much for your input. The reason why I'm performing the questionnaire like this is because I'm doing it worldwide. In my research I'm taking into account that many countries have many differences in their approaches of diabetes education. While most countries use the DSME framework (especially western-oriented countries), other countries prefer to maintain a different approach on their diabetes education.

Sweden, for instance, does not include any rigorous nutrition changes in their education towards diabetics; this is primarily because it is socially not accepted to alter a diet too much. While they do incorporate a dietician in diabetes care, most hospitals (not all) prefer not to talk about absolutes.

This also has to do with the amount of time that is being invested in getting people to exercise. In most European countries, the 30 minute workout per day recommendations are widely advertised. In Sweden, on the other hand, they advertise with a higher amount of intensive workouts. When I would be focusing on one specific topic (like for instance the carb intakes) it would be providing too many different results and provide possible bias to my research. England has a specific focus, the USA had a different focus, just like Japan, Argentina and Iran.

Instead, I designed the questionnaire around the DSME framework, and put it in such a way that most countries can comply to it (even those that have no integration of DSME in their diabetes education). I will note your comments into my research as well, because it is a good point. Yet, diabetes is very specific from person to person. So when developing a educational platform, you should provide people with as much generalized information as possible, which is also scientifically proven. This does not change the fact that even that the outcomes of those scientific results can differ from person to person.

NoCrbs4Me said:

Ya, I was thinking the same thing. If people want to really learn about how to treat their diabetes, there's already brilliant online technology in operation: this forum!

Click to expand...

Very much true, fora's are a very important part of connecting patients to other patients and getting education from expert to peer. But one thing that has been proven is that in some cases support from patient fora's can also endanger newly admitted patients as well. I posted a test question in another research of mine on the diabetes forum (highly respected) for Japan. They are very much interested in the same things as happening in here. I came up with a scenario which I experienced a while ago myself.

Despite the fact that I have 27 years of experience with type 1 diabetes myself, sometimes even my body surprises me in certain situations. I came up with a scenario where I was suffering from the seasonable flu. My blood glucose went from 29.3 mmol/ml (not very unlikely with flu) at 7 in the morning to 3.8 mmol/ml at 9, where it was 26.4 mmol/ml around lunch again. I had no explanation for it and asked people what I should do (since in Japan it is very likely to use fora's first, and medical advice second). I got suggestions to bolus my insulin with 5 to 10 extra units from some participants (while I take 4 units of NovoRapid for breakfast, lunch and just before dinner). Other people recommended me to use 5 to 10 tablets of glycogen. Then I told them after I had taken the insulin that now my hypo- and hyperglycaemia's are even worse.

What members failed to realize was that the flu can be a cause of rigorous changes in your blood glucose, and after all, I did not mention I had the flu (since I wasn't aware of this myself at that time in the scenario) they recommended me to do dangerous actions to catch up with the hypo- and hyperglycaemia's. What this research shows is that even in well respected sites and fora's, the lack of so-called meta-data can be a difference between getting cured or getting hospitalized.

I am applauding fora like these, I really do, but in order for a newly diagnosed patient, which my focus is on in my research, to understand what is happening in fora and inside the doctors room, they need to learn a basic understanding of how diabetes works. What influences illness, working out, the temperature outside, and other factors can have on your blood glucose. And that sometimes, when you feel a combination of symptoms that aren't normal, you should always consult a doctor.

AcrossThePond said:

Done. But I have to agree with other comments regarding the nature and scope of the online education MOOC plans to provide. If it only mirrors current misinformation and erroneous advice on diet and blood sugar goals and targets, it would only perpetuate the problem many (if not most) diabetics already face in terms of having their conditions continue to "progress and degrade" instead of normalizing and living healthy lives like people who do not have diabetes. The biggest problem in current medical practices, views and guidelines is that there is a tendency to view diabetes as a single disease. Then recommend generalized yardsticks and guidelines that are embraced as a blueprint for everyone and that simply doesn't work and has never worked except, perhaps, for a relatively small percentage of the diabetic population. Just look at the raw statistics for diabetes complications if you have any doubts. I am a veteran (past tense) of previous complications that were successfully reversed (healed) by simply normalizing my blood sugar levels. I have remained complications-free for over a decade after achieving "true normal" levels and not the "under 7.0" A1c levels recommended by most medical professionals and organizations.

Click to expand...

First of all I would like to applaud you for that. I myself have suffered from retinopathy and cerebrovascular disease, both also reverted by having a healthy lifestyle and losing more than half of my body weight in less than 4 months. And you are absolutely right about the approaches they are having. Diabetes is such a complex disease that it is virtually impossible to treat it as a "one size fits all" disease. So many things are depending on so many things, and even now, they recently introduced diabetes 1.5 which is completely new to the field and has new symptoms and approaches.

Yet, there are countries in the world where they are trying to use the framework (DSME) to approach diabetes in a multidisciplinary view. DSME is based on the following 9 guidelines:

• Disease and treatment process;
• Incorporate nutritional management into lifestyle;
• Incorporate physical activity into lifestyle;
• Using medications safely;
• Monitoring blood glucose, interpreting and using results;
• Prevention, detection, and treatment of acute complications;
• Prevention, detection and treatment of chronic complications;
• Developing strategies to address psychosocial issues;
• Develop strategies to promote health/change behaviour.
  

Basically these guidelines approach diabetes care as a multidisciplinary disease, yet still doctors and diabetic professionals (educators included) still are stuck in this old fashioned view that diabetes is just "keeping your hemoglobin around normoglycaemic levels and then you'll be fine. That's also why we are trying to investigate whether we should include medical experts into these educational platforms as well. Not just to let them educate themselves or their colleagues, but also to see the discussions going on in assignments and fora's. Because believe me, as a medical professional myself, I barely have time left to actually scan through all the fora's out there. And this is where the actual word goes around.

But great input, definitely taking it with my in my results! Thanks for that

phoenix said:

Hi I didn't complete your questionnaire because I'm in an odd situation.I had what would have been a good diabetes education but in a language that I didn't speak well. I have similar problems with discussing things with my doctors. It is though a language problem so I really didn't know how to answer your questions.
I am though a huge fan of MOOCs and think that it is a brilliant idea.
. I have done 2 Coursera diabetes courses and enjoyed both of them . Neither course though was aimed at people with diabetes and required at least some background ie the one from the University of Copenhagen stated that it was
"aimed at students who are on an advanced undergraduate or beginning graduate level with a background in biology, medicine or life sciences.
Experienced health care providers and others interested in the newest diabetes research and knowledge can also follow the course"
I found that there were many people on the forums that hadn't realised the type of course it was and who really wanted a more introductory course. Quite a few actually gave up on the course but stayed on the forums to ask questions and discuss matters with fellow PWD.
Sadly on neither course was there very much staff or TA input ( I think the all the best courses have staff involvement in the forums!)

One thing I think would be hard is making things relevant to thousands of people from so many different parts of the world .Some will have restricted access to medicines, technology . They will have very diverse diets.
Not everyone doing these courses does have the access to computers that we have. They are not going to be on forums like this. I've noticed that there are some students from developing countries who access Coursera from community owned computers.
Thinking out loud, videos and notes could be downloaded by local educators and reused with their students. (maybe getting captions translated into several languages; one course I did had them in Chinese, English, French and I think Hebrew)

Click to expand...

Thank you for the great input phoenix! As a matter of fact, I am trying to spin off a patient education department within Karolinska Medical University in Stockholm. We are also part of MOOC's like edX (Kx) and OpenOnline. Although our focus now is still on educating learners, me and three other professors are trying to build a platform where patients can follow guidelines about their disease.

And you are absolutely right about those limitations in terms of language, captions, availability to computers, etc. Diabetes is a massive problem in Africa and the middle east. It is estimated that 74% of the people living in Kuwait are suffering from obesity right now. Imagine how many of those are potential risks for becoming type 1, 1.5 or 2 diabetic. Changing lifestyles is very difficult, from the results of the questionnaire I can see for instance that the majority of Europeans likes to get the (what we call) "pamper-preventative-treatment". While people in India, Africa and South America prefer to have the "worst-case-scenario-therapy", it is culturally very different which approach works best, hence also why MOOC's only work in close collaboration with behaviour therapists, endocrinologists and other medical experts. But we can provide a solution for people in so many ways. I experience for example that I have to travel a lot for my school.

Last month alone I was in China, Japan and New Zealand, just like many other Swedes have to travel a lot. Imagine that a newly diagnosed diabetic patient would go to any of these countries, and all of a sudden they have a question related to their blood glucose or their medication. By using a public available internet connection, and a MOOC, this patient could find scientifically proven information, education and video's, wherever he is and whenever he wants.

Great input, that thinking out loud session was very good

NoCrbs4Me said:

"Sometimes you should always?" That's not confusing!

So how would a MOOC address the scenario you presented?

My point is that for type 2 diabetics, we are given (in my opinion) very bad advice by official sources to eat lots of carbs (45% to 65% of our calories) and restrict fat consumption. If all the MOOCs do is repeat this bad advice, it's quite pointless - even counter productive.

Click to expand...

To the general (european) population that is a very normal approach. But not in Japan, China, Vietnam, Mongolia, and other Asian countries. In countries on other continents the approach of consulting a doctor is very different compared to the Euro-American approach.

That is what I am trying to figure out in my study. What is essential to the diabetic patient (the input I get from this discussion is very helpful on this). I decided to place the link to the questionnaire also primarily on fora to start a discussion with members, which thankfully is also happening in here.

What a MOOC should present is also depending on the rules and regulations in countries. Most European countries have guidelines on how education should take place. If you plan to develop a MOOC that is presenting information that is against those guidelines you can publish it, but you will be required to have a big banner on top of the website telling people these are personal recommendations, not medically backed-up.

In order to get approval from medical authorities to publish educational systems for patient education you need to follow the rules and guidelines, otherwise no hospital or medical facility is allowed to "formally" refer you to the platform. That is what we are trying to prevent. Also, by opening the discussion with diabetics, in MOOC fora, motivations to change the guidelines could be addressed to governmental institutions as well. A perfect example happened in Switzerland in 2012. People in diabetes fora were complaining about the combination of the carb intake and the medication prescription. Hemoglobin A1C was rising nationwide, and people were complaining a lot.

Thanks to a monitoring programme developed by the masters programme I am graduating in, the Swiss medical authorities saw that they had to drastically revise their recommendations. Also, because people were complaining on a semi-educational platform (in fora-format) in the different cantons. The most difficult part of patient education is that, unlike normal distance learning programmes, you are subjected to so many rules and regulations that sometimes it is difficult to see the goal of the education in general.

CollieBoy said:

@bmanfranssen
further to your questions on education, i was diagnosed in 2008. In 2009, i was offered a place on the then new(ish) XPERT programme, a 6x2hr Type 2 diabetic course, run by "trainers", in my case a practice nurse! Despite being on insulin, I was given no advice on this as the trainer only knew oral meds or Diet& Exercise. Diet was the conventional "eat plenty of starchy carbs" ad at least 130g carbs! the promised 12 month follow up never arrived. (I have since accessed the latest version of XPERT via Dr Trudi Deakin herself and it has been excellent! the problem with the coursed is that they are filtered through the strengths/weaknesses/prejudices of the trainers presenting the courses.

Click to expand...

It seems like there is a massive gap in the knowledge of the diabetic nurse in general, the trainers and the patients. I wonder also why they would depend on the knowledge of a diabetic nurse while there is a dietician for that. There is a certain expertise field in nutrition studies focussing on diabetics. Why aren't they using the expertise of these people instead of the general knowledge of the diabetic nurse.

Can I ask you also a personal question Collieboy? You can answer this in a personal message to me if you like, but what do you mean with the second sentence in your signature?