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!

New Year’s Resolutions

I returned to Holland on Christmas eve (got an upgrade to Business Class on Emirates for the first leg so had a very pleasant journey). It was wonderful to see Victor again after 18 days apart. We spent a quiet and relaxed Christmas together.

During my holidays in Malaysia I was able to join in the discussion organized by Kim, a very inspiring Ph.D. student in Professor van Weert’s research group. I really enjoyed the discussions that took place (anonymously). It made me think about my own ambitions and ideas.

I’ve come up with the following new year’s resolutions:

  1. To write one or more books about my experiences
  2. To set up a social network for people living with cancer (mostly stage 4 patients but anyone who wants to can join)
  3. To finish my fiction novel and (screen)plays

On January 4th, we went to our friend N’s house for her baby shower (and b-day). It was great fun. She sent me a link for a writing workshop and I signed up right away. In February I’m following the novel workshop and in March the “From Blog to Book” workshop. I spoke to Lisa who organizes and leads the workshops and I’m really looking forward to it.

This past week I started working again, but mostly I’m thinking about how I can make a difference for other people living with cancer. I spoke with a top oncologist – who is a good friend of one of our friends – this morning. I intend to solve 2 problems: getting patients with metastases the information they need and making information about treatments available to this group.

He suggested that I connect with other people and organizations. He mentioned that it seems that most patient organizations are not very effective in making changes. He also explained to me that the treatment that saved my life (Mitomycine-C) is not commonly used anymore because studies could not identify for which patients treatment would be effective. Sometimes it worked and sometimes it didn’t. This world-famous oncologist told me that if I had come to his hospital chances are I would not have been given this particular treatment. I replied: In that case, I wouldn’t be here now talking with you then. He informed me that one of the reasons patients don’t get the information they need is lack of time (average of 7 minutes per patient at the regional hospitals and 20 minutes at the national cancer center AVL). A second reason is that there are a lot of rules for research studies (set by national government, European Union and ethics committees) which prevent the right information from being shared.

My own oncologist had told me that it worked between 60-80% of the time.

So I’ve decided to focus on patient advocacy and empowerment. I will also try to focus on these topics in my research, but I intend to do the research primarily to support this goal. So far I’ve read some publications and formulated my research questions. I intended to do a content analysis but am still looking for good tools to automate the content analysis, so any tips are most welcome.

For now, best wishes for all of you for a wonderful 2014. I will report back next week after my checkup at the AVL Hospital.

Here’s a quote from brainy quote:

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.
Helen Keller

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!