Sarcoma Intelligent Specialist Network and How We Got Here
by Roger Wilson, Honorary President of SPAGN.
“You must be treated by specialists at an expert centre!”
One of the first things a newly diagnosed sarcoma patient is told when they contact a patient support group is that they must be treated by expert doctors in a specialist centre. But no one knows how to judge whether there are experts in a centre or not. All there is to rely on is the word of the support group or of the doctors, which can be biased or simply untrue.
The cautionary tale of the patient who is told by the doctor “I am really looking forward to treating you because I have never seen one of these before” is not a fiction, I have heard it myself. It is also true that there have been surgeons who asserted expertise even though there was a high level of recurrence among their patients. These patients were then treated by oncologists and were no longer the surgeon’s concern. If that patient died, it could be chalked up to a failure of oncology.
Fortunately, in many countries we have broken away from those poor practices of the past. Most importantly, we now have multi-disciplinary treatment, with multi-disciplinary meetings that allow treatment opportunities to be maximised for patient benefit. But beyond that we still do not know how to describe a specialist expert centre.
Developing a Universal Definition of an Expert Centre
SPAGN set out a year ago to work towards a universally acceptable definition of an expert centre which would allow new patients to get a quick understanding and support groups to gain deeper knowledge of their country’s resources. Such a definition would also provide a base for campaigning, while giving doctors in a centre which is developing its expertise a clear understanding of what we as patients expect. The aim is to work collaboratively with SPAGN member groups and with leading clinicians across the world.
We developed a Discussion Paper which formed the basis for a debate at the SPAGN Conference in Dublin in May 2023. We documented this debate and drew out of it a draft set of Core Principles as well as supporting Features and Recommendations, which could form the basis for a self-appraisal by a Centre or Network. This step was followed by a two-stage consultation, firstly within SPAGN and its members, then with leading clinicians.
The Connective Tissue Oncology Society (CTOS) asked us to present our main conclusions in the opening session of its annual conference in Dublin on 2nd November. The session was entitled “Improving Sarcoma Care Globally: Access, Equity, Advocacy and Policy”.
Our approach is based on our answer to the question “How can we assess a Centre or Network which calls itself ‘expert’ or ‘specialist’?”. It would be easy to say we need to inspect or to examine evidence, but the reality is that this is not practicable. We don´t have the financial or manpower resources as patient groups to do that. So we have to rely on the doctors’ self-assessment. Taking this approach requires a common standard. We therefore have to offer the treatment centres a tool which is easy to understand and easy for them to use.
Our friends and members at the Sarcoma Foundation of America (SFA) have taken this approach for some years now. Their standard is based on multi-disciplinarity, imaging and pathology. These three factors underpin a primary diagnosis and are recognised in clinical guidelines from organisations such as the National Comprehensive Cancer Network (NCCN) and the European Society for Medical Oncology (ESMO). A positive self-assessment generates recognition on the SFA website and is thus readily available to patients.
We have taken these three factors -- multi-disciplinarity, imaging and pathology -- as our Core Principles. They are more fully explained in the full paper which, for example, emphasises the importance of skilled and knowledgeable radiologists and pathologists working in and with the other members of a multi-disciplinary team.
Why “Network”? Why “Intelligent”?
The use of the term Network, rather than Centre, is important. We recognise that there are national and regional situations where a multi-disciplinary approach will involve more than one hospital, with maybe even multiple providers in departments which otherwise have little or no contact with each other.
A Centre or Network which meets these three Core Principles -- multidisciplinary, imaging, and pathology -- can call itself a Sarcoma Intelligent Specialist Network. A single-site Centre would probably continue to describe itself as a Sarcoma Centre, but that is a matter of choice.
Why do we use the word “intelligent”? What does it mean in this context?
The word “intelligent” deliberately draws attention to the supporting Features and Recommendations which the paper puts forward and which are included in the self-appraisal tool developed in the project. Some of these Features (such as the involvement of specialist sarcoma nurses) would be very desirable as additional Core Principles, but the ability of many specialist units to have such features is constrained by national practices and regulations, complex budgets and funding, and broader medical and cultural issues. Therefore, these remain Features and in a self-appraisal they can be described as “met”, “unmet but working on it”, or “unable to meet”. The importance of honesty in the appraisal process has been identified -- one route to ensuring honesty is to have local patients working on the self-appraisal.
Our Self-Appraisal Tool: Targets for Doctors and Feedback from Users
The Recommendations listed in the self-appraisal tool also include targets for doctors: We want to see doctors involved in research, including clinical trials; we want doctors attending international sarcoma meetings; and we also want doctors to address issues such as shared decision-making as a practice which must be developed.
As this is a work in progress, we hope that users will help us improve it. Following feedback from the professional community at CTOS, we are revising the paper and strengthening it. The self-appraisal tool – currently still an early working version -- has been well received and we anticipate a few people testing it out in the coming weeks. While we are confident that many specialist centres will assess very positively, we also hope that they spot ideas and issues which they can work on to get even better at what they do.
Ultimately, A Tool for Advocates
We are confident that our approach will be valid for those countries which are currently without a specialist treatment capability. The paper will offer advocates a tool to use politically and in their healthcare system to gather the support to develop specialism in treating sarcoma.
We also know that where a specialist ambition is identified, progress can be rapid once funding support is made available. Education and training are available internationally. Experienced Centres and Networks around the world will offer Fellowships and CTOS has a mentorship programme enabling attendance at each year’s Conference.
When we set out on this project, we could not be sure where it would lead. We have not reached the end yet, but maybe we are close to the end of the beginning.
We invite you to read and use the self-appraisal tool and send us any feedback you may have. If you are interested in reading the paper, contact us: sarcoma@elitemail.org.
Bio: Roger Wilson, the Honorary President of SPAGN, is currently working as a patient on two sarcoma clinical studies, on the steering group of two scientific developments and supporting two PhD research students.