Access to eHealth records for Patients

Some of you wanted to hear about my research project. I am working on a research proposal about making information available to patients with metastases. Lately I’ve been looking into the topic of eHealth. eHealth is about developing a digital information infrastructure to support the health care needs of patients and professionals.

In The Netherlands, we have a national eHealth infrastructure which can support hospitals with standards and data exchange formats. There is also a framework for developing patient portals based on the electronic health records (electronic patient dossiers – EPDs- as we call them here). But the development of eHealth projects is done at the local or regional level. And there they run into very practical problems: a lack of expertise, vendor lock-ins and complex organizations. Not to mention security issues and risks and limited budgets.

I’ve always focused on the issue of getting digital access to your personal data  (which is a key concept behind many systems now in use such as DigiD and Mijn But I have not worked in the health care sector before.

On January 21st I attended a meeting about patient portals. Besides myself, there were two patients who asked questions. Many information managers from hospitals were present as well. It is clear that they are struggling to make this work. A national organization – Nictiz – has developed infrastructural building blocks needed to build a patient portal. But in practice, it is difficult to make this work. 

Here’s a great video from Australia about their eHealth system.

Makes it look easy, doesn’t it?

At the moment, most hospitals have EPDs (systems with medical records) which are primarily focused on supporting the medical staff in the registration proces. They frequently need to share information with other medical professionals. But who can access the patient’s medical records? By law, a patient needs to give permission before his or her medical records can be shared by other health care professionals. To enable this, the website offers an online registration form so that patients can indicate which professionals can access their health records.

Two initiatives seem promising: is a patient-oriented portal to which you can subscribe as patient. But only a few hospitals are involved. At the meeting, the founder explained how he set up this project when his daughter was diagnosed with a chronic disease at age 3. Another initiative is Iederedagbeter, an initiative by someone with whom I worked in the past who is also chronically ill.

To me, it seems that giving access to the patient is the first step. Here is where my personal experience and professional expertise can help others. For starters, there is no overview of which hospitals give access to patients. By accident I discovered that the AVL has a patient portal but I still have no access (not for metastases I think). This is an example of why it is so difficult for patients to find the information they (we) need: it is fragmented and not communicated.

This is a problem that needs solving. The way I see it, any portal could work as long as the EPD systems can provide the data and files. And that’s where I suspect the real problems lie. In other sectors most systems are closed – vendors don’t want to allow other vendors access to their systems. This is why the Dutch government is a strong advocate of open standards.  But it is up to the individual organizations who procure systems to use the standards that we’ve agreed on.

So the first issue is how can we force vendors to comply with open standards and to provide information (web)services. This is really a pre-requisite for patient portals to work. It also makes more sense to me to place the patient portals outside the domain of hospitals. Perhaps patient advocacy organizations can get involved in the discussion. The second issue is how to organise the information so that it is accessible . And again, this is where patient organizations can make a real contribution. So where should we start? Let’s turn the system around and start with what patients need.  Perhaps you can help me spread this post!

Looking back

Dear friends,

On november 1st, our much loved dog Flo passed away. It was really hard on me, and also on Victor, my sister, mom and kids who loved her dearly.

Muddy Flo
Muddy Flo

We will miss her so much!

A week later my sister showed me an article in the New York times about the untimely passing of my mentor: Stanford professor Cliff Nass. I had just had the good fortune to see him in September in Paris. We had talked in the bus  on the way back from the special Seine cruise. It was so good to see him again after 20 years (I graduated from Stanford in 1993). He was a test driver for the automated Google car and could talk very passionately about his students and his research on multitasking, the human brain, communication and driving automatic cars.

A week later I heard one of my colleagues at Unisys had passed away as well. Hans was a very jovial and kind person, always ready to help. He was an avid actor and Shakespearian, which really impressed me. I had worked with him a few times, we’d had a chance to talk during those days and he will be much missed by his family and colleagues.

In November I connected with dr. van Weert (whom I had met at the patient conference on Oct 12th). She is an Associate Professor in the Department of Communication at the University of Amsterdam and is willing to help me with starting a Ph.D. She invited me to a research meeting about patient-doctor communication at the AMC hospital, hosted by the research group in Medical Psychology. It was a very interesting meeting, and afterwards I briefly met some other Ph.D. students. I plan to start my research in January and I want to focus on communication about metastatic cancer. I plan to start analyzing  the media effects of charity campaigns (think of Pink Ribbon type campaigns) on self-efficacy and fears of metastatic breast cancer patients (in online discussion forums).

End of November, I went to our local farmers market in Eemnes with a good friend and I bumped into friends from Huizen. The farmers market is organized by Ria who used to be our next door neighbor but now lives on the Meentweg in Eemnes (see the Blommenhoeve for more information).

In early December I was able to complete my work and deliver the new Architecture for Digikoppeling. I’ve been asked to continue on the project and was asked for another project as well. We had a really fun dinner and game with the whole team and I really enjoyed it!

On December 4th, I had another checkup at the hospital. My friend G joined me and waited patiently as I went to get my blood test done and waited for the doctor. Fortunately all was well. The liver showed slightly higher levels but that could be due to the medication (Letrozol) that I’m on. My next appointment is in the middle of January.

On December 7th, I left Holland and arrived in Kuala Lumpur on the 8th. I met Nancy at the airport and together we took the KLIA Express into KL. The next day we went to Ipoh and my dad picked us up at the train station. It’s been really good to see him. He lives in a nice house in Ipoh, near hot springs and a water park. It’s the rainy season here so it rains hard for a few hours each day. This weekend we’ll visit Penang, and we hope to meet up with our friend Bommy.

Next time I’ll upload some pictures. Take care!

Good results!

Dear friends,

Last wednesday, October 2nd, I had an appointment with my oncologist, Dr. Baars. She had good results for me. The MRI showed a reduction in the tumor from 1.1 cm to 0.8 cm. No new lesions or washout (whatever that means) have appeared. The previous scans had shown that the lymph nodes appeared normal again. The CT scans, as always, are difficult to read since cancer cells cannot be distinguished from scar tissue. And since the Mytomycine-C treatment of the liver, the liver is mostly scarred. But the areas in which they could discern tumors, the scans showed a reduction in these tumors as well. So the cancer is clearly in regression/remission.

Even my oncologist seemed relieved. My next appointment is on December 4th. I mentioned that my left arm has been painful the past few months. Usually the pain occurs at night. Sometimes I wake up in the middle of the night with pain in my left arm and hand. In the morning, the stiffness usually disappears. Dr. Baars referred me to the hospital neurologist (18th of October) and a nurse took pictures of my neck and arm. So we’ll have to see.

Last night, Marc Dufour stopped by. I was home late because I volunteered at the Undergraduate College Fair, organised by John Terwilliger on behalf of the Ivy Circle. The fair took place at the International School of Amsterdam. Quite a lot of kids stopped by our Penn table , and Flor  – who graduated from the University of Pennsylvania in 2010 – and I enthousiastically explained the admissions process, how great Penn is, and how good the faculty is. A lot of young students were really impressive and wanted to study in the US. There were quite a few Dutch students as well. I heard it is very difficult to get in Penn these days, standards are even higher than when I attended.

Marc is visiting his family and friends for about two weeks. It was good to see him, it has been a few years since we had seen him and of course, that was before he (and I) found out we have cancer. Marc has been following a special treatment, which has kept him alive for longer than he had anticipated. This past May, however, scans revealed new tumors in his lungs, which are now the size of orange/grapefruits. He underwent radiation therapy and feels much better. We had a great time but had to break off our conversation because Victor wanted to watch Three Days of the Condor – a great movie btw with Robert Redford. Ofcourse Marc and I knew every scene already and inevitably, Victor dozed off.

This morning I went for a run (it was really warm!). And today we went to the framer to get the enlargements of our wedding pictures framed. It’s quite expensive but it’ll be nice to have them hanging in our house. Tonight is Ada’s party but I’m a bit tired. And tomorrow I have Aerial Yoga which is great fun! I’m not at all limber but it’s like playing around (we do yoga postures  in draped fabric which hangs from the ceiling).

Have a great Saturday evening and Sunday!

Second opinion – continued

Yesterday – Monday October 29th – we had our second meeting with dr. Westgeest. He gave us his (and his team’s) opinion on my situation. He began by explaining that had I come to the VU for treatment after the first diagnosis, they would have started me on a taxane based treatment (like Taxol). But there are more ways to treat this disease. Unfortunately, when I was diagnosed, it was already far advanced and metastasized in the liver. The treatment AVL is giving me, directly to the liver may offer additional time if it works. Dr. Westgeest advised us to stick to this treatment and await the results. He confirmed that we’re in good hands at the AVL, which is a renowned cancer institute with the top specialists. He saw no need for additional checks later on. If at any time we’re not sure, we should ask dr. Baars, who can explain things to us. For now, we are reassured that this is the best course of action. We thanked him for his time and good explanations and left the VU. I felt reassured by his advice and am convinced the treatment I’m getting at the AVL is the best possible at this moment. Now we have to wait for the 14th and see if it has the desired effect.


The results

Today at 11 am I had a meeting with my oncologist – our first. My friend Ingrid Claassen joined me for the meeting, since Victor was too late to cancel his assessments. Ingrid has written quite a lot of patient brochures for different organizations, such as the Dutch association for general practitioners, and she is familiar with the medical terminology. A great friend to have by your side at a time like this. The sun was shining as we walked into Tergooi Hilversum.

The oncologist was a young man. As soon as we sat down, he said to me: “I have bad news. Very bad news. The cancer had spread inside your liver.” He gave me a moment to react, and I nodded. “Do you understand what this means?,” he said to me earnestly, “It means we cannot cure you.” I explained that I understood exactly what he meant and that I had seen this coming, and was prepared for this answer. He couldn’t believe I was so calm. He apologized for starting our first meeting this way, normally, he explained, we meet the patient first and then go through the process. Now, he had to start with the news that I cannot get better.

He asked if I had seen the CT scans of the liver and since I had not, he showed them to us. The scans showed a large, no a huge liver. The liver had grown past the left ribcage into the area where the heart is, and was pressing against the lungs and stomach. That explains why I have been short of breath, my longs have less space to breathe. The scans also showed darker spots spread around the liver; these are the metastases (uitzaaiingen).

Next, the oncologist asked us to get my blood analysed and then to come back. Basically, he continued, we have to start the chemo as soon as possible. It is the only way to try to reverse what is happening in the liver. It is more important to treat the liver now, than the breast. You won’t die of the breast tumor, but of the liver. He conducted a quick physical examination and asked if anything hurt. But that was not the case. Ingrid said later that while I got dressed he  told her that one cannot get used to this (meaning the bad news). Also, he was extremely surprised that I was in such good condition (which is funny, since I thought all this time that my condition was poor). That may be a blessing in disguise. He said we have no time to lose.

The doctor had discussed the results with two colleagues and agreed on the following: 3 rounds of chemo. So this wednesday will be my first day of chemo. I will get the AC chemo, at 80% strength. There is a risk that the liver cannot handle the chemo and will fail. But there is also a chance that the chemo will help to reduce the tumor size. In three weeks time, a blood test will show whether the chemo has effect. Then the second round of chemo will start. After the third round, the team will discuss the state of the liver and perhaps introduce other therapies. In the meantime, I can eat what I want as long as I don’t lose more weight. So I think I’ll add some french fries to my diet of vegetables and oatmeal! He stressed that it was very important to be honest at all times. I could ask anything but I should stay clear of unconfirmed stories and sources. He also stressed I should not take any form of vitamin supplements since it could interfere with the working of the chemo and could cloud the results.

We had to come back at 1 pm to talk to the nurse about the chemo, so we had a chance to have a bite to eat. I was starving, so no issue there.

The nurse was kind and explained the whole process to us. Fortunately Ingrid took copious notes because I heard what she said but couldn’t remember much. I will get a special cold cap which is meant to protect the hair roots to prevent hairloss. Also, I will get a special injection to boost the production of white blood cells. Next, we went to the drug counter to pick up the anti-sickness medication. I made a joke that I always thought Victor ran the risk of liver disease because he likes to drink whiskey and wine (he stopped drinking btw) and now here I was with a near-liver-failure. She thought I took it all very lightly. Well, I’ve decided whether I have weeks or months or years to live, I’m going to make the best of it and I mean to have as good a time as I can possibly have. Carpe diem! Onwards we go!
Afterwards we had a very nice tea and cheesecake in the tea house in the woods, where my mom, sister , Barbara, Valentine and Flo were waiting. Although it was raining, it was still very fun! So much for now.

The results

After waiting an hour in the waiting room, we were called into the surgeon’s office. He began with the MRI. The MRI showed that the tumor area was about 7 cm large, which confirmed his initial diagnosis and meant that the full breast and skin would have to be removed.

He continued by telling us that the bone scan was fine, and also the lungs were free of metastases. This was not the case for the liver. The radiologist had seen some abnormal tissue on the echo and had requested the CT Scan. The CT scan showed that the liver was highly damaged. The doctor asked me if I had any liver diseases in the past, such as Hepatisis B or C. Apparently my liver looked like one with cirrhosis. This could also be damaged due the cancer cells, but in that case the liver would be infected all over. The only way to be sure is to take a liver biopt. Since there was a multidisciplinary meeting in the afternoon where my case would be discussed, my doctor asked me to return at 15.10.

This is of course bad news. If the breast cancer has infected the whole liver, there’s not much that can be done about it. Chemo therapy is then the only option.

We went back at 15.10 pm to discuss the outcome of the meeting. The doctor informed us that the team agreed a liver biopt should be taken, and he had scheduled it for tomorrow. Before the biopt is taken, a bloodtest must be done to check the blood’s ability to clot, and to check for Hepatisis B or C. Next week, I am scheduled to meet with the oncologist to discuss the results, if they are done in time, and possible treatments.

Since I’ve been doing some research on the internet, I’ve learned that metastases in the liver are a bad thing. Basically, getting better is unlikely and treatments are aimed at prolonging your quality of life. Still, nothing to do but wait for the next set of results. So tomorrow, I’ll go in for a liver biopt.

It still seems unreal to me that I would have such a bad liver, considering I’m hardly ever sick, and have been eating healthy my whole life. I will now try to come to terms with the diagnosis and try to make the best of things! I’m so glad Victor is such a wonderful supporting husband and best friend. Thanks again to everyone for your support, it means a lot to me.

Lots of love

Beautiful hortensia from G

I first told my mom, Annet and the kids. Annet came immediately to comfort me and hear the news. The kids were shocked, and had a hard time with the news. My mom came straight away and was so smart to pick up Indian food.

As we told our friends and neighbors, lots of love started pouring in. I felt so loved by everyone’s thoughts, good wishes, the beautiful flowers sent by Marja, Patrick en Anne.

and by Sheira Mohaboe.

Saturday my mom helped me with the front garden and we emptied the green house, to create a nice relax space for me. On Saturday, my friend G stopped by with a beautiful bright pink hortensia, and she explained about her experience with breast cancer.

Just an hour later, Bart stopped by and later Marita  came with a huge purple lavender.

In the US and in Holland several friends and family members are praying for me and lighting candles.

Thanks to everyone for your warm wishes and support! It means so much to me, and gives me so much strength!

I feel lots of positive energy and I feel very optimistic.

Thursday June 28th 2012

On Monday June 25th, I went to see my GP because I had noticed blood coming from my right breast, about a week before. She immediately felt a hard swelling on top of my right breast. It was odd that I had not noticed it before.

She immediately scheduled appointments for me at Ter Gooi hospital in Blaricum, which is a lovely village in Holland, very close to Eemnes where we live.

On Thursday, I drove to the hospital for my appointment with Dr. Sneijder at 9 am. He conducted a physical examination and concluded that besides the swelling in the breast, two glands in the armpit were also suspect. He warned me this could be bad news and sent me to Radiology.

First I went to the mammogram – your breast is placed on a shelf and a transparant shelf comes down and crushes it. Very awkward and somewhat painful. I felt faint, since I had not eaten. The nurse was really kind and concerned. She told me to eat something before the biopsy.

The radiologist then conducted an echo, and gave me a local anesthetic in the breast and made a small incision. Next, a large needle went into the incision to remove tissue (6 times). With a thin needle, he removed cells from the two glands in the armpit. After that, I went home.

At two pm, Victor and I were back at the hospital to hear the initial results. Dr. Sneijder informed us that the cells from the glands were cancerous, which meant I had breast cancer. He expected that we would need to remove the whole breast to be safe and also any glands that were infected. A special nurse helped us then to explain about the next steps – additional tests – and to plan in the appointments. Victor was really emotional. This was the beginning of a new phase: life with cancer.

my blog

Dear friends and family,

I’ve started this blog to keep you all informed about my health. About two weeks ago, I noticed blood trickling from my right breast. My GP sent me to the hospital for tests. Last Thursday, June 28th 2012, I was diagnosed with breast cancer. Since I had no idea that anything was wrong this was quite a shock.

I am keeping this blog as a way to keep track of all the events and my progress through the various phases of treatment.  Please share this with anyone you wish. I am writing the blog in English so that my friends in the US and my family can stay in touch.

I want to thank each and everyone of you for your support and kind thoughts.