Dutch interest association for people with multiple sclerosis

The MS Association Netherlands is the only organization of its kind in the Netherlands, offering services to patients and loved ones affected by multiple sclerosis (MS). It has three core tasks: advocacy, peer contact and information provision. The association is managed by a board and five office staff serving some 8,000 affiliated members. The national organization is divided into 19 regions led by volunteers who are close to the members. The MS Association Netherlands offers its members information, knowledge and contact with meetings, a quarterly magazine, a telephone service, websites, coaches, educators and two advisory bodies (medical and expert).

It’s important to collect data about the members in order to look after the members’ interests, to provide them with the right information and to ensure that they can easily find each other. To achieve this, the MS Association Netherlands used a system which was purchased a few years ago, says Annette Veltman, volunteer coordinator at the MS Association Netherlands. “A system like that gets filled over time: a field is added here and there, links or check marks get added… Before you know it, the system gets overly convoluted.” For example, making a selection was not straightforward. “I could filter a selection in three ways, but with the same conditions three different lists would come out,” Veltman says. 

“We started looking for a system where we had one card per relationship with all the relevant data, from which actions could be taken – such as sending newsletters and theme-based mailings. In addition, we wanted a system that was integrated, so we didn’t have to work with multiple applications to be able to send a newsletter, for example.”

Speaking each other’s language

To get her bearings, Veltman started talking to the Parkinson’s Association. “At the time, they had just been using a new member engagement software for a year that they were very excited about. The name was Procurios.” The office staff team also looked at another software, but while it was cheaper, it turned out to be a standard package. “We don’t have a particularly different membership system, but we do work together with our volunteers in a specific way and we have our own style.” The question was whether the cheaper solution allowed customization and what that would cost. The style of the MS Association Netherlands fit Procurios and that’s why the association, which has about 8,000 members and 300 volunteers, chose that platform.

After a demo of the platform and after the financial reconciliation, the MS Association examined who would carry out the project internally. “The corona pandemic had just broken out, which had quite far-reaching consequences for our volunteers. It brought some of my work to a halt. That’s why I picked it up, together with the secretary who runs the membership administration,” says Veltman. Although the team had thought out well in advance what requirements the software package had to meet and how it should be set up, the implementation proved a bit bumpy at times. “We sat at the table with a technician and it turned out we didn’t ‘speak the same language’,” Veltman smiles. “We really had to learn to understand each other, which took some time. Not only was there a lack of technical knowledge on our side, but it’s also not easy to explain your own processes without assumptions or presuppositions. As a result, we sometimes talked over each other’s heads. But eventually we came to an agreement, and I have had a very good experience with the consultant from Procurios.”

 Cleaning up data

Another challenge (which turned out to be a blessing in disguise) was the transfer of years of collected data across different databases and systems into one uniform relationship card. “That was a huge job,” according to Veltman. “But it was also a lot of fun going through all the data and naming new target groups. Sometimes we wondered why on earth we kept certain information, but we also came across things where we realized we may not even be allowed to ask for anymore in the age of the General Data Protection Regulation (GDPR). This fresh look at our data and information gave us good insight into the organization.” 

It also caused the MS Association Netherlands to look at existing processes in a new way. Although the association has only been working with Procurios for half a year, it has already made steps forward. As an example, Veltman says that by cleaning the data it’s now easier to select the target groups the association wants to take action on. “Of course we are only a relatively small team and we’re still learning about the software each day, but we can see that our new way of working offers new opportunities.”

Learning to work with the Procurios system took some time – and some still things need to be figured out. Procurios provides an online help center with all kinds of articles and how-to’s in which you can first search for answers yourself. Additionally, a training was organized for volunteers. “We had to learn for ourselves, for example, about the creation of relationship lists, names of newly created fields, and exactly how to make a selection. From the region, two volunteers have been given access to the Procurios platform. They can only access the data of members in their own region and only the information relevant to them. In this way, they can quickly and easily reach members, for example for sending out invitations or Christmas cards. There are still some questions from the regions about how to do certain things, but we’re getting better and better at looking up the answer. A big advantage of this new system is that when a volunteer runs into something, I can just log in and see exactly where the problem is. That wasn’t possible with the previous software.”

Happy volunteers

That makes her job as volunteer coordinator easier, and also more fun. “Ultimately, I want to do everything I can to make it as easy as possible for volunteers in the region to serve the members. This software makes that possible.” In addition, Procurios puts volunteers back in control. “Some people are out of the workforce because of their illness. But their volunteer position gives them a task again, and they get trained for it. I notice that people appreciate that. Because we now work with Procurios, part of the pressure is removed. Suppose someone drops out unexpectedly – which is not unusual with MS –, then a volunteer doesn’t have to worry that half of, for example, a newsletter is on his or her own computer. Everything is cloud-based, everyone can access it and we can easily take over. That gives peace of mind.”

Because all information is now centralized, the team can easily filter specific target groups. “That offers a lot of possibilities for the future,” Veltman thinks. “It now becomes possible to work in a theme-oriented way, for example, by bundling information on ‘MS and work’ or ‘MS and pregnancy’. This wasn’t possible in the previous system. Moreover, with the Procurios Platform we have a better view of the money flows through the link with our billing. All-in-all, our membership administration has become a lot cleaner.” Another advantage is that Procurios can add the wishes of the association to the platform. “This ensures that you can also hitch a ride on generic developments for other organizations and associations, because ultimately these things become available to all customers. I also like that about Procurios: the software is much more in development than our previous system.”

 Challenges

Although Veltman had anticipated obstacles, they weren’t as bad as she expected. “We are particularly proud that we have a new system and that we have cleaned up all the data. The fact that the data transfer was relatively easy, is also because our team thought about it very well beforehand. This certainly contributed to the success of the implementation.”

When asked about improvement points, Veltman said: “Sometimes, I found it difficult to estimate where we exactly stood in the implementation process. I would’ve liked a little more information from Procurios about that. Our association isn’t ‘swimming in money’, and because we didn’t know how many hours we still had available or whether we were at risk of running out of budget, we were a little cautious at times.”

Currently, the MS Association Netherlands is working with Procurios on the implementation of a module that makes it possible for volunteers to send regional newsletters from the system. “We are looking forward with great anticipation. Regional newsletters are very relevant to our members, but so far they were made in random programs, with random colors and random images. When we can send the regional newsletters from Procurios, everything will be in our in-house style and we will communicate with uniformity and consistency.”

Veltman would also advise other associations to use Procurios’ platform, just as the Parkinson’s Association did to her. “But then I would like to give the tip to bring experts to the table for each sub-area. In our case I did all the talking, but when setting up the financial module it would’ve been more convenient if our financial guy had been at the table.” She also stresses the importance of careful pre-planning of each decision. “Some front-end decisions can have far-reaching consequences at the back-end. Try to explain as well and clearly as possible why you want something, what you mean by it, and what it should be able to do.”