“You can ask your questions in a safe and private environment. In my opinion, this is the most important factor. After all, this is an inherited disorder.”
The CDH1 Foundation is a patient organization in the Netherlands dedicated to helping people with an abnormality in the CDH1 gene, which carries an increased risk of hereditary stomach and breast cancer. With only about 35 affected families in the Netherlands, this condition is enormously rare.
Elvira Nijkamp, herself a carrier of the CDH1 gene, decided to get involved with the foundation after her own diagnosis and the challenges that came with it. Thanks to her efforts, the foundation has become more active, with improved provision of information through the Socie App, which offers fellow sufferers a safe and private environment for mutual contact and support.
Can you tell a little more about yourself and the CDH1 Foundation?
I am Elvira Nijkamp (51 ). I was diagnosed with breast cancer two years ago, and as a result, my DNA was tested. It was then discovered that I have an abnormality in the CDH1 gene. If you have that abnormality, you have an increased risk of hereditary stomach and breast cancer. It is very unknown and very rare. Doctors estimate that there are about 35 families in the Netherlands in whom this gene abnormality occurs.
Stomach removal
The only thing patients can do to prevent stomach cancer is to have the stomach removed as a precaution. Your world is completely turned upside down when that is said to you. You immediately think, “Will I be able to eat then, without a stomach?” “What will my life be like then?” “Will I only be able to drink smoothies then?” Your head spins.
Can you tell a little more about yourself and the CDH1 Foundation?
I am Elvira Nijkamp (51 ). I was diagnosed with breast cancer two years ago and as a result of that, research was done on my DNA. It was then discovered that I have an abnormality in the CDH1 gene. If you have that abnormality, you have an increased risk of hereditary stomach and breast cancer. It is very unknown and very rare. Doctors estimate that there are about 35 families in the Netherlands in whom this gene abnormality occurs.
Stomach removal
The only thing patients can do to prevent stomach cancer is to have the stomach removed as a precaution. Your world is completely turned upside down when that is said to you. You immediately think, “Will I be able to eat then, without a stomach?” “What will my life be like then?” “Will I only be able to drink smoothies then?” Your head spins.
Looking for help
I then started looking online for information. It is rare, but there are more people who have this and I wanted to find them. I found the website of Stichting CDH1. This is the patient organization in the Netherlands. There was little information on the site. The foundation has been around for 10 years, but it was actually a dormant foundation. Once every two years a national information day was organized, but nothing else happened. I was shocked because I did need information. I could only contact the board. I personally found that a very high threshold. Only after a year, when I had finished treatment and was recovering, did I realize that I wanted to get involved.
Go ahead, we support you!
My background is a communications consultant. I saw many opportunities to improve the provision of information from the foundation. I contacted the board and they were super happy that I wanted to do something. They indicated they had little time. The deviation had already become more than normal for them and therefore less urgent. Then they kind of gave me carte blanche: “Go ahead, we support you.” I then raised a grant last year and put out the question to the foundation’s supporters if there were people who wanted to get involved in the foundation. A new board was then formed.
The Socie app
One of the board members stumbled upon the Socie App. I had already set up a WhatsApp community myself because setting up a new website takes a lot of time. I quickly put together the WhatsApp community so that people could find each other. With WhatsApp, conversations naturally go in all directions. There are a lot of snags, but I noticed the need for contact. That’s when I started looking at the Socie App.
I read all the cases and saw a great solution for better managing privacy. You can ask your questions in a safe and private environment. This, in my opinion, is the most important factor. After all, this is a hereditary disorder. For example, in one family with five adult children, everyone may be advised to take out the stomach. Everyone deals with that very differently. For some, it feels like a ticking time bomb and therefore want the surgery right away and the next may say, “I’m very athletic and young and I just want the stomach checks first.” This can cause tension in a family, especially if you have not had contact with certain family members for a long time, for example. In addition, it concerns your health and you quickly think, “How do I tell my children?” Sometimes then you can’t get together.
Safe contact with others
The nice thing about the Socie App is that you get in touch with others. If it bothers you that your brother/sister is reading along, you can discuss it with someone else. I want to move towards offering a platform where all these people can find each other. We are now a board of four people. And I would like us to no longer take an active role in this, but for people to do it themselves. Everyone has their own needs. When you get the diagnosis, you have to process this news first. You go through different stages. You don’t immediately want information about life after gastrectomy after the diagnosis. For example, you then first want to know what it means if you choose to have only gastric checks. The information should come to you in stages. You can regulate this well in the Socie App by creating different groups. For example, there is a group “Living without a stomach. In this, tips are exchanged with each other. But there is also a group for young adults. They still have a life ahead of them and want to build their career, for example. They fit better in a group with peers.
Why did you decide to deploy an App?
The site was dormant, but in particular there was no low-threshold platform for mutual contact. The website has already been improved, but the site is more for external communication. When people are diagnosed, they come to the site. But for your individual questions, you need a safe and private environment. On cancer.com you also have many options, but this is still more public and also more general. This condition is so rare, which makes you want to speak with people who have the same thing. You don’t just want to speak with someone who has breast cancer, but rather with someone who has breast cancer and in addition the gene abnormality. You’ll find that with us.
We have only just started using the Socie App. We had a good demonstration by William from Socie. We then set up the App. Then we started actively inviting people. We now have 80 people (patients) in the App. They have the gene defect themselves or they are partners/neighbors of someone with the gene defect.
Our own safe environment
Most importantly, we started the Socie App because this is a safe environment. No one else gets in. That’s also how the App is set up. The people who are in it can’t just invite someone else. They can send a link to family. Then people come to a form, where they have to indicate who they are and why they want to be in the App. Do you have the gene defect yourself or are you a family member/neighbor? It’s obviously based on trust, but we assume this is true. This is also how we get the target group more mapped out .
How did the setup of the Socie App go?
Well, that went very quickly. I attended a Socie presentation by William. Then William created a demo App and I asked him to make a few more additions. This he incorporated into it. It was then a very nice, well-organized presentation to the board. I am a communications consultant and have been a webmaster for several companies in the past. I’m used to setting up websites. You have to dive in and do it. If you have that knack, it goes quickly. I further set up the demo and invited the board to be a test group. Then you immediately see a few mistakes. Those are then easy to adjust. We started a little discussion in the App, so you also get notifications, etc. That way we were well prepared and familiarized with the App. Then we started actively inviting people.
How did the rollout of the Socie App go?
We started communicating with all the channels we have. On FaceBook, in the newsletter and via WhatsApp. On WhatsApp, we indicated that we were going to stop using WhatsApp and switch to the Socie App. Immediately a number of people started switching and the community filled up.
How were the initial reactions to the Socie App?
We created a group “Introduce Yourself. The board had already done this themselves. As a result, people recognized themselves in it and were themselves motivated to tell their stories. This group went very quickly. Really great. People recognized themselves. That group also indicated: “How nice that this community exists. It is also really the only place where they can find each other. You have contact with your doctor, but otherwise it is difficult. In the Socie App you can also be very passive. Sometimes that is also very nice. Just reading the stories and processing it.
Who manages or administers the Socie App?
I am the only administrator. We have another administrator, but he is more passive. I already have many ideas about the future, but we are still at the beginning now. I can also do just fine on my own now. Soon I want to divide up the management. The plans are already in my head. In due course we will roll them out. For now, it’s fine.
Who uses the Socie App?
The patients and some partners. Right now we are focusing mainly on the patients. They have the highest need. I am in discussions with the board, though, about what we can do for the partners in the future. Especially when you have had your stomach removed, your diet becomes completely different and this has a big impact on a family. Partners could really use the support. In the future, we would like to do a project for loved ones. And also for young adults, who we hardly have in the App now. We don’t know now how to best reach that group. They want to live a normal life and not be confronted too much with the gene abnormality.
What are you doing to keep the Socie App relevant?
I have many ideas, but it involves volunteering and people have little time. In addition, the volunteers are usually the people with the gene abnormality and therefore not always fit. We have to prioritize what we are going to do. This goes step by step, at a certain pace. We are not a commercial company so it goes slowly. Keeping the App active is still a challenge. We think it’s very important that stakeholders have access to the information. The App is free. Money should not be an obstacle. We have donors and a grant. But how do we get them into the App and how do we keep the App alive is still a challenge.
We are starting plans, though. In the fall, we want to present the App at the national meeting. We want to use the App there interactively, for example by immediately posting photos live in the App’s photo album. I also love the fact that you can see on the map of the Netherlands where everyone lives. That is so useful for our foundation, because patients live all over the country. You can take a quick look at the map to get a good idea of where everyone else lives. To do this, however, everyone must fill in their address information. The plan at the national meeting is to have attendees fill this in on the spot on the Socie App and show it live immediately. That way it is immediately interactive.
How do you like using the Socie App so far?
What does the Socie App provide?
Understanding patients’ stories and how different these stories are. But also what they encounter in their daily lives and how we might anticipate them. It also provides a low-threshold approach. They can find each other without having to approach the board. In addition, from the board’s perspective, the direct contact with our patients, for whom we are committed, is very pleasant. We work well with the doctors. They are not allowed to share patient contact information with us. We would like all people in the Netherlands who have this gene abnormality to be in the Socie App so that we can serve them.
What do you find the most useful feature or opportunity of the Socie App?
Very nice is the map of the Netherlands, where you can see where the patients live. So we would like to organize regional evenings and this way you can easily see where people live (provided they fill in their details). This has not been done enough yet. Possibly we should give more direction to this, by giving an instruction, for example.
In addition, the “Introduce Yourself” group is very nice. People decide for themselves how much they share about their lives with this gene abnormality, but as a communications consultant, I quickly get a picture of the target group. I see a lot of potential in the App, but more time needs to be put into it.
Would you recommend the Socie App to other organizations?
Yes, absolutely. In fact, I have already recommended it to the Owners’ Association that I belong to. You see, I have a vacation home on a park with an owners’ association. That board was also running into some issues, such as: how to share documents, how to conduct a survey, etc. I then set up a demo app in a test environment. They were immediately very enthusiastic. Previously we used WhatsApp, but that got too messy. (Read our blog on the differences between Socie and WhatsApp here).
I also see the added value for patient organizations. If you only use WhatsApp, then as a patient you are constantly confronted with your illness. Not everyone wants that. With the Socie App, it is a conscious choice to open the App and inform or communicate.
