ICMCC

Medical and Care Compunetics – The Future of Patient-Related ICT

Ladies and gentlemen, dear friends,

Welcome to our fourth event.
Thank you Andy, especially for chairing this session, which normally would have been my job. But as some of you know I’m still recovering from a quite serious chemotherapy and my energy level is not yet back to what it should be.

I intended to start this talk with a small overview about the development of ICMCC, the word compunetics, that kind of things. But my estimated board members talked me out of it, convincing me that this might be the right platform to share with you some of the experiences I had the last year as a patient. No worries, I will not elaborate for the full 30 minutes on this subject. And the original version of my speech you will find afterwards on the website.

At the end of March last year I went into surgery for what was diagnosed by 3 different surgeons as a hemorrhoid. To be honest, I was a bit surprised by that, because the thing was bigger than a chicken egg and on the outside under the regular skin. However, 3 doctors singing the same tune helps to convince you. Because of the size I decided to make a picture of it, for posterity. During surgery I heard my surgeon mumble what falls under “famous last words”: “I haven’t got a clue what I’m taking away”. It should have got all my alarm bells going, but it didn’t. Three days after the surgery the wound burst open.

I went for a check up a week later and was told that I should see the oncologist the next day. I asked for the pathology report that only mentioned that it was malicious. So as a good boy I went to see the oncologist the next day and when he started his standard talk I convinced him that he did not have to use his normal lingo. He then informed me that it was a b-cell non-Hodgkin lymphoma. I looked at him and asked if he knew what he was talking about. Of course he understood me wrongly so I opened my laptop and showed him the picture. You should have seen his face… And I asked him for the final pathology report as well as an email in English telling me what his final diagnosis was. To my surprise the pathologist said is was CD 20 negative, where the oncologist named it CD 20 positive.

In the following weeks I had a bone marrow puncture and a CT-scan. 4 weeks after the surgery I went for the results and my oncologist told me, as if I hadn’t noticed, that he had forgotten to do physical exams as well as blood exams. His excuse, and I quote, “It must have been the shock of you producing that picture”. A PET scan had to be done, which showed in the expected area cellular activity. Blood results were good. Since there were still 2 conflicting diagnoses on the table I asked for a second opinion on the tissue. It took weeks before the oncologist agreed. Finally, I’m talking about 4 months after the surgery, the report came in. My oncologist sent me a mail saying that it confirmed the diagnosis. He forgot to mention which one. So I asked, no I begged for a copy of the report; in the end I had to bully them saying that I was the one requesting a second opinion in the first place. To my amazement the report talked about a certain coloring, not mentioned in the original pathology report, being positive and I quote “as mentioned by the hospital, sample was not sent”. So the second opinion seemed to be biased.

In the meantime, underneath that ever more opening wound, the tumor had started to grow back. And I can assure you, living on an average of 3000 mg ibuprofen a day is not my idea of an ideal situation. So I decided to get into action and finally ended up in Geneva. Living according to the rules of telemedicine I had taken pictures of the growing monster every day during the 4,5 months since surgery. That was a big help and in Geneva the diagnosis was made within minutes with help of all the visual material. By the way, it was almost funny to see doctors’ faces turn ashen; the monster was 20 centimeters large. But no worries, I won’t show them to you.. Geneva confirmed the original diagnosis by the pathologist, which meant elimination of a possible immunotherapy.

I started CHOP treatment, which was continued in the main cancer clinic here in The Netherlands. When I entered for my first interview with my new oncologist my first phrase was, please write down I’m not your average patient. If you can handle that we can get through this together. We agreed that there would be 5 more CHOP treatments every 3 weeks, including each time, as is normal for CHOP, Prednisone, at 620 mg during 8 days. Plus an additional spinal treatment as it was a stem cell cancer. And afterwards I would have to go though radiation therapy. For your information, the cancer was completely local and not metastasized at all. After the 2nd round, and despite the chemotherapy, the wound had healed and the tumor had disappeared. After the 3rd round the PET scan still showed cellular activity in the tumor area; which was also the case after the 6th and last treatment.

I had already expressed my hesitation about radiation therapy as I did not really look forward to the prospect of having a baggy growing from my belly. But with the PET scan result they wanted to have a physical exam, which turned out completely clean. Now there was some serious panic and the strong advice was to really go for preventative radiation. When I asked what they wanted to radiate, since they were not able to pinpoint it, the answer was, a larger area, meaning most of my bottom. Which I right out refused. Under heavy protest, as it was a most aggressive cancer in a very unusual spot, my doctor accepted that decision. And then the most amazing thing happened. I will summarize it. I was told to come back after 3 months for another PET scan and that it might take 3-6 months to recover from the treatment and that I might feel tired. Full stop. In plain English, we poisoned you up to your eye balls, the cancer seems to have been gone, we congratulate you, so far you survived. That I was almost completely paralyzed from the waist down due to the neuropathy and that I was drowning in prednisone was not an issue. No support groups were mentioned, nothing was told about the detox side effects, nor was I given any guidelines how to handle the detox. The following PET scan showed the same cellular activity and it was concluded that the cause might very well be a restless colon. No mention anymore of radiotherapy. And ever since, no attention was paid to all the after effects, and they were more than severe. Imagine what would have happened if I had not been the informed and stubborn patient. Then the real pain in the ass, pardon my French, would have been mine; now I was theirs.

Let’s now get back to ICMCC and my continuing focus on the concept of knowledge centers. At last year’s conference I missed a lot of what happened as I was in the middle of those 4,5 months of recurring tumor. But afterwards I stayed in touch with two British doctors, Richard Fitton and Brian Fisher, who probably without realizing helped me to make a switch. It occurred to me that knowledge centers are not centers of knowledge, they are centers where information is turned into knowledge. From there it didn’t take long to see, that if we give a patient access to information he would and should be able to turn it into knowledge. As I say in my proceedings article, knowledge is information combined with experience. Man’s most primal experience is his own life, his own body, his own health, his own well-being. So if you combine the information with the experience, people will be enabled to create knowledge, knowledge about their situation, maybe even about themselves.

Our focus on record access stems from the heart felt wish to show professionals that you can be more effective once you have all the information on a patient together in one place, that you can avoid mistakes, diminish the risks of medication errors, and understand the processes a patient is living through. And maybe even more important to make the patient aware of his growing responsibility, to give him access to the information he needs to understand his situation, his problems, which will help him in making his own decisions, together with those who want to help him professionally. I want to show how important it is to keep record of your own situation, your own experiences with health, with treatments.

From there, it was a small step to creating a knowledge centre on patient record access.

• What do we know about the reactions of people to their own information?
• How do we make that information reliable, trustworthy, understandable?
• How do we give people the tools to combine that information with their own experience?

It is a small field, so it was relatively easy to put together a portal on record access. And I made a conscious choice to use references to sources that are freely available on the internet as much as I could. It is sometimes difficult, for some good articles are published in places where you have to pay to be able to read them. As this was meant for non-professionals as well, that was exactly what I wanted to avoid. Therefore I never claimed that the portal is giving all the aspects in sufficient detail. But it is a first example of what a knowledge centre can be.
While building the portal the realization came that patient’s access is certainly not an important issue on the agenda of those who design the policies. Even worse, there is strong objection from many parts of the professional community. Therefore we decided to draft a recommendation on patient record access to the WHO which we are going to discuss this afternoon during the Round Table, hopefully to come up with a version that can be made final before the end of this year to be presented to the WHO. Thus we can put patient record access on the political and policy maps. You will hear more about this today from a number of our speakers.

We also started a weblog on Record Access, which became the example for a Dutch national information and discussion platform, which Mrs Van Bennekom is going to launch later this morning. And I hope we will be able to start similar initiatives in other countries, to give citizens a voice in the development of their medical future.

During my months of treatment and recovery, I often wondered if what I was doing with ICMCC was the right thing. I also asked myself if I was still trying to achieve the goals Swamy and I had been talking about. The problem was that Swamy died before we really could become specific on certain issues. As always, the answer to such questions comes from unexpected angles. Last August Professor Joachim Nagel stepped down as president of the IFMBE, the largest society on medical and biological engineering in the world. In his president’s report he specifically named 5 projects that had come out of the member societies in his three years of presidency and the record access portal was one of those. For your information, we opened the portal a week before he wrote that report. And then Professor Blobel offered to organize a workshop at our event, for the fourth time. On top of that Professor Kun accepted to give a keynote talk. All have known Swamy for decades, known about his ideas, his vision. And many more of his often close friends have become and stay very strong supporters of what I am doing with ICMCC, what we are doing. That has given me the confidence that we are still going in the direction we had envisioned from the start.

To make a difference we not only have to talk the talk, we also will have to walk the walk. Connecting people is essential. We will have to bring people together to exchange knowledge and information. Modern technologies make that kind of exchange much easier. An example is the longer term problem of the management of data. Not only storage, but the way we handle these data, how we turn them into information, how we combine them with experience to make them into knowledge. How to handle patient and medical records data, monitoring data, social data, behavioral data (like disease surveillance), secondary data (like information site usage), to name a few, will be the subject of an ICMCC working group that I want to establish before the end of this year.

But we also decided to walk the walk, to act.
We knew knowledge portals were necessary, so we started building them. And that is what I intend to continue doing.
So in the next months, we will improve and extend the record access portal.
I want ICMCC to start a similar portal on ICT and Autism as it is a subject that is very close to some of our ICMCC people who have autistic children. ICT and Alzheimer will be another one.
Once we have the experience from these relatively small subjects, we can move on to larger areas like cancer. The first requests for an oncology knowledge portal have already come in.

At the same time I do not want to loose sight of the work we have to do towards the professionals. So we will continue working with the WABT, and other organizations like the IFMBE and the UNESCO, to set up a knowledge centre on biotechnology with as ultimate goal to use it as the source for an extended program of e-learning, covering as much of the available global information and knowledge as possible.
And there is of course our knowledge centre on Digital Homecare, the first global guide on the subject that we want to publish within the next 12 months.
In these fields, as in many more to come, gathering the knowledge for and from professionals will help us to translate it into information for the citizens as they will be confronted with these areas more and more in the years to come. We want to show that modern technology can be of immense help for both patient and professionals to achieve a better understanding, a better cooperation, a better health. And that modern technology can help to improve cost-effective health.

As I write in my article, the methods of education are changing. The traditional way of bringing people to a central location where they are told what they have to know and how they are going to acquire it will to a certain extend disappear. And with the growing availability of information people will become curious and willing to educate themselves. With this kind of knowledge centers we offer people the access to that information. These knowledge centers can lay the foundation for new processes of e-learning.

Of course, I am aware that there are immense consequences to this. I am aware of the fact that we will have to change our medical system, that we will have to find ways to help people getting used to the fact that they are responsible for their own health and that they have the right to make their own decisions, if they so wish. This will put an immense burden on the medical profession, as it will need a major mind shift. And it is our duty to assist in this process. But we should not end where all seems to end, in endless discussions. We need to act. And one of the best ways to achieve this mind shift, for both professionals and patients, is by showing them what we are talking about, how it might look like, how it might work. That’s why I’m proud that we have Amir Hannan’s presentation this afternoon.

We will have to find ways to bring information in such a way that it is understandable and easily accessible, also for those who have a low level of literacy. You find examples in my article. We will have to find ways to make information accessible for free, or at least for considerably less money than it costs now and accessible in as many languages as possible.

As, in a political sense, health is a national issue, there is a growing need for national platforms that supply information on medication policy, availability of medication, disease approach, quality of medical services, etc.. A small example; we in The Netherlands have a very strict policy on the use and prescription of antibiotics; in many other countries they are available over the counter.
With the growing mobility, a central portal is needed to access these national platforms, thus enabling travelers to read this national information in a language they can understand. We at ICMCC want to start working on such a portal.

Related to this is the trans-national portability of Electronic Health Records. It is therefore of a major urgency that a central terminology standard like SNOMED CT will be accepted by all countries in Europe and that we have to focus on the work on ontologies and semantics. Only then the information in the EHR can be read and understood in a safe way by any caregiver, independent of his locus operandi.

This is what ICMCC is about:

• Building awareness tools that will make medicine and care focused on the patient,
• with the patient in a leading role,
• but where clinicians, medical staff and caregivers can perform to their best,
• supported by the best equipment,
• based on information and experience from peers and others,
• based on sustainable knowledge and
• therefore in the most cost-effective way we can achieve in a growing market,
• not only in our part of the world, but in any part of the world,

I think that is the kind of work that is worth all the support we can get. During this event, small as it may be, we have gathered a number of excellent people, which is shown by the level of the contributions. Although we seem to grow smaller in number of attendees, the quality of our event has improved immensely over those few years. I urge you all to help us keeping this in motion, to tell other people about our goals, to help us build these platforms of information and knowledge; to share your experience and knowledge with us and to inspire others to do the same. And if by any chance you find an institution that could provide us with some financial aid, I would be most grateful, for so far, all this has been done on a voluntary basis.

Initially I felt disappointed and embarrassed by the small size of this event. One of my board members wrote recently that it doesn’t matter if our event has 5, 50 or 5000 people. He said: “I feel the brain trust and ideas that are generated in this group extend into my public health sector all year long and end up benefiting user community and someday our patient community”. When our message reaches the right people, it will spread. All big things start small, that’s the essence of humanity.

Thank you!

Lodewijk Bos

11 June 2007 | Categories: 2007, Conferences, Speeches.
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