NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence – a summary from Ronny Allan
What is a NET Specialist?
“What is a NET Specialist” is a frequently asked question but there’s no official definition of what constitutes a “NET Specialist”, and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let’s just say specialist and expert are the same thing given there is no exam or special qualification to become one.
In the broadest sense, a NET Specialist is a doctor who is not only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and uses locally/regionally established and consensus guidelines to treat and manage them. A NET Specialist does not have to be a specific clinical or medical discipline, they can be an oncologist, a surgeon, an endocrinologist, a gastroenterologist or (less commonly) be from other disciplines.
A NET Specialist is likely to have authored/co-authored papers about NETs (including treatment guidelines) and be involved with clinical research/trials associated with NETs. This doctor is also likely to be a member and/or leader of a NET multidisciplinary team (MDT) (see below) and also be a member of their regional and other NET scientific societies.
There is no course or exam to be taken to become one (….yet!), the accolade is normally based on accumulated knowledge and experience from their participation in a NET MDT and elsewhere.
The question is much simpler in countries that run accreditation programmes such as ENETS with their Centre of Excellence system (see below). The hospital (often containing a group of ‘satellite’ hospitals) is by default a hospital where you can find experts by sheer dint of their accreditation and experience in treating a wide range of different Neuroendocrine Cancer patients via a multi-disciplinary team (MDT) – see definition below. You will definitely find experienced “NET Specialists” at these sites.
Many “NET Specialists” also treat other cancers. You will not find many who only treat NET partients and that is not a prequisite for being a NET Specialist
Note: NET is used throughout but NET MDTs cater for most types of Neuroendocrine Neoplasms (NENs). Depending on where you live, some specialist may refer certain types of very specialist NENs to other specialists or MDTs. e.g. Merkel Cell Carcinoma may be referred to a Skin Cancer MDT, Small Cell Lung Cancer may be referred to a Lung Cancer MDT. This may differ from country to country.
A multidisciplinary team (MDT) is a group of health and care staff who are members of different professions, which work together to make decisions regarding the treatment of individual patients. They can be assembled for many illnesses including cancer, and within that, including NET. The composition of the team can be variable, depending on the type of tumour or even the individual patient being discussed, i.e. particular specialists can be co-opted onto the team.
What is a Tumor Board? In some countries, the term Tumor Board is used – it’s the same concept and is a synonym of MDT.
Large hospitals with a high throughput of patients may establish a Program or dedicated unit for NETs.
Note: In some scenarios, particularly in large countries where extensive travel to an MDT may be needed, an MDT may work with a partner closer to where the patient lives. However, the MDT still functions as per above and normally retains control of certain functions, e.g. carries out major treatments.
Some hospitals have an MDT but have not yet gained formal accreditation, these also contain people who will be considered experts and are in the process of seeking accreditation. Despite any lack of formal accreditation, you will still find experienced people here because in the most general terms, a “NET specialist” is a doctor with experience in treating many NET patients. For example, ENETS accreditation depends on having a minimum number of patients on a hospital’s patient list. This is why you see many geographically close hospitals coming together to form a single MDT.
Some regions operate a “Centre of Excellence” accreditation for a NET MDT, e.g. ENETS Centres of Excellence (CoE). This program provides accreditation and certification to ensure quality by setting standards and following robust and transparent measurement processes. These standards should help patients identify high-value service and therapy options. Healthcare professions benefit from increased recognition and ongoing improvements to their services. ENETS believes that its standard setting and its influence on professional organisations lead to a positive impact on patient outcomes.
In 2008, ENETS set up an accreditation /certification program which allows applying centres to display:
The ENETS accreditation process is large and complex but you can get an idea of how they decide to approve – click here
Almost 70 ENETS CoEs have been accredited since 2009, including several outside Europe. See below for the list.
Cancer is complex and NETs are no stranger to this description. Studies have shown that the MDT approach is the best way to deliver the complex care needed by most cancer patients.
Published lists frequently shared can be notoriously out of date and the criteria used for inclusion is not normally clear. My aim is is to collate and build something up to date via my own research and patient input from my own group, the biggest online NET support group in the world.
The next section will provide you with the “list of lists” of NET Specialists, MDTs and accredited Centres of Excellence where these are known and published by NET scientific and advocate organisations.
Other than accredited centres of excellence, there is no listed criteria hospitals and doctors have been listed by their local/regional organisations. In some cases, the list is anecdotal, and have been suggested by other patients and local advocate organisations because that is all that exists.
Local knowledge from other patients is always very useful, and that means joining my group, the largest in the world and comprises patients and their advocates around the world – see green box below. I have many ‘amateur NET sleuths’ in my group who can definitely point you in the right direction (but remember they are not doctors).
It doesn’t matter who people personally think is the best specialist by name. Clearly I could tell you that my doctor is the best simply because this doctor treats me. That accolade could be given to scores of doctors and there is no league table published using peer reviewed criteria. I think people need to look wider than ‘rock star fame’ that exists in certain countries. One person’s choice is not necessarily the best choice for you. The ‘pecking order’ posts I see in my group are often misleading and considerably biased.
In my humble opinion, the best NET Specialist for you is the one that has access to …….. (in alphabetical order) experienced endocrinologists, gastroenterologists, oncologists, pathologists, radiologists (including interventional and nuclear), specialist nurses and dietitians (etc etc etc). As all of these MDT members (including those co-opted) work with this specialist, they will have experience of NET.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some content may be generated by AI which can sometimes be misinterpreted. Please check any references attached.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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