Facilitating Collaboration in Sarcoma Care

The Interview

CORY: So you've been here for the evolution of SPAGN from being more of a European organization to becoming more of a global organization. That's part of the name change. Can you talk a little bit about the conversation around that transition and why the organization made that shift?

 

BERND: Yes, that's right. We started off as a more European-based organization, and then we discovered that there are a lot of member organizations that wanted to join from all over the world. From the US, India, South Africa and so on. And so we increasingly had the feeling that it would make sense to set up everything on a global level and that also led to the name change.

By the way, this is actually a very popular topic, and as you may have seen, the CTOS (Connective Tissue Oncology Society) meeting this year also has the motto "Global Impact, Global Outreach.” So it's a very important motivation and goal at the moment. I think SPAGN fits in very well with the current developments.

 

Defining collaboration in sarcoma care

CORY: So when we talk about collaboration, collaboration can mean a lot of different things. It can be collaboration between the patient and their doctor, between advocacy groups and policymakers. But can we also talk about why it's important both for patients and advocacy groups to connect with their peers in other countries?

 

BERND: I am deeply convinced that it's important to really involve patients in all the decision- making we are doing. For example, one thing which worked out very well are these roundtables we are doing. I'm very much involved in the Desmoid Tumor Roundtable. This is an initiative we started almost ten years ago in 2014. At the very beginning it was a rather small meeting with patients and patient advocates from SPAGN and with medical experts mainly from Europe.

It grew to become a bigger group and now it's a global desmoid tumor working group with participants from all around the world. We just had our update meeting recently in Milan and people came from North America, South America, Europe, South Africa, Australia, etc.

The idea of these meetings is to set up treatment and management recommendations. And for this, it is essential to really hear the patient's voice and to really know how patients feel and how the disease impacts them daily.

We had a very engaged patient involvement at this meeting, with more than ten patients and patient advocates out of about 60 participants. So this is really very helpful and very important.

The second example is involvement in clinical research. And this is something we are also trying to do when we develop clinical trials.

I'm also active in the EORTC (European Organization for Research and Treatment of Cancers) Soft Tissue and Bone Sarcoma Group. And when we develop clinical trials we really try to engage the patients and the patient advocates from the very beginning. We want to know what the important things are that we have to look at when setting up the trial design or the patient reported outcome evaluations, and so on.

 

CORY: When you're talking about setting up trials and collaborating with patients from the beginning, is that something that you've always done in your career or was that something that you discovered and started to do later?

 

BERND: That's definitely something that has changed over the years. I don't think it was like that ten years ago. Now, for example, the EORTC has a dedicated patient council and they involve patients in the setup of clinical trials. Also companies, at least some of them, have dedicated patient representatives.

With companies, to be honest, it's sometimes more difficult, of course. Even for us as medical experts, it's sometimes more difficult to really be involved in the setup of a clinical trial because a lot of decisions are made by the company. But, we are trying to be involved and also involve the patients.

But for academic organizations such as EORTC, this is something which is quite settled.

 

CORY: Do you find that you get a lot of pushback from the companies that are setting up these trials? Are they resistant to patient involvement? Or is it more that they just didn't realize that it was important until the issue was raised?

 

BERND: I think they are open to it, at least. But, as you know, a lot of company decisions are made for internal reasons. This is difficult for us medical experts. We are usually involved within advisory boards and things like that. But in the end, decisions about trial design are usually made by the company – again for multiple internal reasons. But, yes, I would say companies are definitely open to that.

And, as you know, SPAGN is constantly in contact with a lot of companies in the sarcoma field.

 

Role of patient advocacy groups

CORY: What is the most important role for patient advocacy groups in helping to facilitate these collaborations?

BERND: We are doing a lot of things on the global level at the moment. And as I said before, the motto of CTOS this year is "Global Outreach, Global Impact." I'm chairing the CTOS Outreach Committee, and we are working on different ways to reach medical experts, but also the patients.

One example I can give you is that we have set up a global travel grant this year. So if you want to come to CTOS and you come from an underrepresented country or a low-income country, you can actually apply for such a travel grant and then CTOS will cover your hotel, flight, and so on. This is something we never had before.

And outreach, of course, also means outreach to the patients and to the patient advocacy groups. One of my main tasks is to be the liaison between the experts and the patients. As you know, SPAGN has a dedicated hospitality lounge at CTOS, and we have the role of an umbrella organization for all the patient organizations that are involved in sarcoma. They can all come to the meeting, come to the lounge and mingle together and exchange ideas.

There is also an ongoing mentor-mentee program within CTOS. So we are planning a get together with these mentors and mentees. And this is also something in which we can involve patients.

For example, my mentee in Brazil has a very strong relationship to a desmoid tumor patient advocacy group. So he can also bring his patient representative to this meeting.

 

Role of specialist sarcoma centers

CORY: Let's shift gears and talk about specialist sarcoma centers. What role do they play in helping to improve this kind of collaboration and patient outcomes?

 

BERND: Yes, important topic. Reference centers, specialized centers, networks, whatever you call them. This is something which is often done on a national level. For example, here in Germany, we have a national certification process for sarcoma units. You have to have certain numbers, a certain number of resections, a certain number of medical therapies, and so on. So the problem on a global scale is that the process is so different in the different countries. I mean, it's different in Europe, it's different in the UK, in France, and wherever.

We set up a network in Europe called EURACAN, which is the European reference network for rare solid adult cancers. It is not only dedicated to sarcomas, but to rare cancer in general, and there's a dedicated domain for bone and soft tissue sarcomas. This has been around for more than five years.

This network helps us to work together on a European level. But on the global level, it's more difficult. There is no global standard for sarcoma centers, it has not been formalized. We set out to define that at the last SPAGN conference, as you know, and came up with a proposal and an abstract which we submitted to CTOS and which will hopefully be presented at the next meeting in Dublin.