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Focused insights from neuroendocrine cancer patient advocates and NET specialists were shared and discussed at the INCA/ENETS Symposium on March 23rd, 2023. The event was held during the 20th Annual ENETS Conference.

The symposium titled “Working Together to Improve Patient Outcomes” was chaired by  INCA President Mark McDonnell and ENETS Chair Eva Tiensuu Janson.

Educating the Non-NEN Physicians

INCA/ENETS Symposium 2023

Dr. Sugandha Dureja, INCA Access Committee Chair and founder of CNETS India, and Prof. Dermot O’Toole, gastroenterologist at ENETS Centre of Excellence at St. Vincent’s University Hospital and St. James’s University Hospital and Trinity College, Dublin, Ireland, discussed the instrumental significance of primary care physicians’ improved understanding of NENs, which inspired the development of the INCA Think NENs Global Educational Program. The clear and focused structure of the program was presented and the approach to alert primary care physicians and facilitate prompt referrals was outlined. In addition, the challenges in raising neuroendocrine cancer awareness among healthcare professionals were discussed and educational initiatives for students, as well as and enriching the medical education syllabus were highlighted.

The Optimal NEN Patient Pathway – From Aspiration to Reality

INCA/ENETS Symposium - Optimal Patient Pathway

The issues of how to make the optimal NEN Patient Pathway a reality were addressed by speakers in the second session. Catherine Bouvier, INCA Advocacy Committee Chair and CEO of Neuroendocrine Cancer UK, noted that developing an optimal patient pathway goes hand in hand with policy change. While a global optimal patient pathway remains an aspiration, driving change on national level is possible when employing the right data, the right support and the right tools.

Catherine Bouvier presented the newly-launched Neuroendocrine Cancer Advocacy & Policy Toolkit – developed to empower INCA members to be stronger advocates.

INCA/ENETS Symposium Optimal Patient Pathway

INCA Executive Director Teodora Kolarova outlined the changes we want to see and how do we get there through specific policy asks. She pointed out what evidence is needed to achieve policy change along the patient pathway. Better incidence and prevalence statistics are necessary to inform policy decisions, and this was highlighted as a major gap. Support to enable a shared care model to provide care for patients living in regional centers is also a priority. Teodora Kolarova asserted that only through working together patients, patient advocates and medical experts can make sense out of a jumbled pathway and turn it into an optimal, guided pathway from diagnosis to palliation.

INCA/ENETS Symposium Optimal Patient Pathway

Dr. Rocio Garcia-Carbonero, medical oncologist at the Hospital Universitario Doce de Octubre in Madrid, outlined the administrative and financial burdens to an integrated patient pathway. Dr. Carbonero identified the tasks for the patient and healthcare professional communities in order to optimize the patient pathway: including awareness, education and support work on the patient side, and education, standardization and collaboration on the healthcare professional side. Focus on developing expertise on rare diseases in the healthcare system and removal of administrative barriers to get expert care should be the priorities for policy-makers.

The Instrumental Role of Patient Input in Research Design

INCA/ENETS Symposium Patients involvement in research

How to get more patient input in NEN research was the third significant topic discussed by patient advocates and NET experts. Stephanie Alband, Executive Director, Pheo Para Alliance, spoke about the ways a common language between patients and researchers can emerge. “Patients need fluency in research processes, researchers need fluency in the patient pathway”, she noted. “Researchers speak a quantitative language, while patients speak a qualitative language. Both must learn the other’s language”, highlighted Stephanie Alband.

INCA/ENETS Symposium Patients and Research Design

Dr. Simron Singh, medical oncologist, Sunnybrook Research Institute, explained the misunderstandings on behalf of researchers regarding the patient experience and objectives. He asserted that these discrepancies can only be addressed through collaboration prior to the initial phases of the research design process. An existing example of systematic partnership between NET researchers, clinicians and patients was given – the Commonwealth Neuroendocrine Tumour research collaborative (CommNETs). CommNETs  formed in 2015 to bring together NET researchers, clinicians and patients from Australia, New Zealand and Canada under one umbrella to encourage the development of clinical trials in neuroendocrine cancers.

Dr. Singh outlined the research design endpoints based on patient preferences related to: symptom control, quality of life, feasibility of treatment, patients’ social situation, cultural issues and financial toxicity.

A fruitful discussion between the ENETS medical experts and INCA patient advocates outlined the joint actions required to achieve improved outcomes for NET patients.

Check out INCA/ENETS Symposium 2022