Professor Jalid Sehouli, the director of the department for Women's Medicine & Director of the Department of Gynecology at the Center for Oncological Surgery at Charité Universitätsmedizin Berlin, spoke with us on Instagram Live in May. He told us about his work independently and within the European Society of Gynaecological Oncology (ESGO) and the European Network of Gynaecological Cancer Advocacy Groups (ENGAGe) against stigma in gynecological cancer treatment and research. He also shared some insight into the new German localization of the Olivia digital ovarian cancer patient support platform, which he launched at the International Charité Mayo Conference in Berlin in connection with World Ovarian Cancer Day. If you are a medical professional, be sure to read to the end for his advice to you about how to communicate with your patients in a way that minimizes stigma!
And of course, you can always watch the replay in our Reels!
World Gynecologic Oncology Day
Let me introduce Professor Sehouli. Although he may not need much of an introduction! Jalid Sehouli is the President-Elect of the European Society of Gynaecological Oncology (ESGO). World Gynecologic Oncology Day is a project of ESGO, so he will be the head of the full family! He's also been, for eight years, the Co-Chair of ENGAGe, which is the European Network of Gynaecological Cancer Advocacy Groups. Again, World Gynecological Oncology Day is an ENGAGe project and started with ENGAGe. He is the head of gynecological oncology at Charite in Berlin. In addition to that, he's the founder and president of PARSGO, the Pan-Arabian Research Society of Gynecological Oncology. He is also the founder of the Northeastern German Association of Oncology and the Ovarian Cancer Foundation in Germany, and he's a podcaster and a published author. Thank you so much for joining!
Prof Sehouli
It’s wonderful to be here today. Thank you very much.
World Gynecologic Oncology Day
I'm very excited to talk to you about gynecological cancer in Germany, in particular because in May you launched the German translation of Olivia, which is our patient support platform for ovarian cancer patients. Is ovarian cancer one of your pet projects? You said that you started the first ovarian cancer. Center in Germany.
Prof Sehouli
I started with women with ovarian cancer because I have seen that the quality of the diagnostics, quality of the treatment, has a crucial impact on overall survival. And I have seen there was a very low awareness about the disease. We started in 2007 as the first Ovarian Cancer Center in Berlin to discuss these issues. And even in Germany, we did many trials to look at the outcome in patients who enter centers who are participating in clinical trials and who are not. We have seen that the overall survival was significantly inferior in centers who are not embedded in a scientific context.
And the same is that the standard of care, what we are always defining in the (clinical) guidelines, was not so adherent in these centers, as it is in centers who are doing clinical trials, because they are monitoring. They are doing analysis of their internal work. That was reason I was so proud when ESGO took the responsibility in European and in global structure.
Since 2017, ESGO now has the accreditation of centers of excellence and centers for different gynecologic malignancies. We started with ovarian cancer, but we transferred this even to other diseases such as endometrial cancer, because at the end of the day, it is not the cancer, it's a woman with a specific disease.
And we see that if you look at the patient journey, it's always important that you have the best diagnostic, the best surgery, the best chemotherapy, the best care treatment, and you have to moderate it.
And this is missing in the healthcare system everywhere, every country, there is no moderation.
And for me, personally, this was the only possibility to educate and to inform patients, right? Because nobody can moderate his life better than somebody who is in the situation. And this is why I am so proud of Olivia, because it's empowering women and their relatives to think about the patient journey as a whole. To look for a second opinion, to look at the opportunities for participating in clinical trials as a second or third option. This is something that I really love.
I was so happy at the Charite Mayo conference, and there was a huge audience, and there was a standing ovation, because at the end of the day, if the patient is more empowered, even the doctors are more empowered. This is something I believe—it is supposed to decrease the access barriers for innovation.
This is something we can see every day: that patients do not have the same chance for the best treatment, and that's the reason why we have stigma.
Stigma in gyne cancers; we have discrimination. When you exclude patients from innovation there is a significant impact on the clinical outcome. And there's some bias that is conscious, some that is unconscious.
And so this is my engagement to support every activity that empowers women with gyne cancers.
World Gynecologic Oncology Day
It's such a big step to bring this equality in health care, because when a woman comes to the doctor with a new diagnosis, she has so little information, usually, right? So Olivia brings that. Then the standardization of the centers then allows all the doctors also to understand what the level is.
We have also had a recent blog about choosing these standardized centers.
What are some of the most pressing concerns for gynecological cancer patients in Germany right now?
Prof Sehouli
I think Germany has one of the best healthcare systems, because access in general is free for everybody. There are many good centers in the country. Nevertheless, we're just starting in Germany now to centralize women with ovarian cancer similar to breast cancer.
Every second woman is still not treated in the best way, even in Germany. If you see the patient journey, if you look at diagnostics, surgical treatments, chemotherapy, maintenance treatment, we see at least in every second woman, there are insufficient treatment recommendations. I think this is very important, that we be honest about our system. So I think again, Germany has one of the best, but it's not good enough. What is missing is really a structured, empowering system, and it's still missing a monitor of activities. They just started to publish even the individual data of the centers regarding surgery and regarding participation in clinical trials, but it's not mandatory at the moment.
So we are focusing, we are pushing from our cancer societies and from our woman cancer groups. But I think it is representative that in Europe and globally, we are missing a monitor of the quality.
[In Germany] we have access to very innovative treatments. We have a huge possibility for so-called off-label use treatment. So even if a drug is not approved, we can apply individually to get the treatment for the patient, especially if they're heavily pre-treated in a relapse situation. In my center, for instance, we have the opportunity for precision oncology, where we do all genomic sequencing, so for genetic testing and the cancer to look for individually targeted therapy.
So this is something, that I'm really proud of but again, there's space for improvement. I think with the support of advocates, including the Ovarian Cancer Foundation, and ESGO, we will even improve the healthcare system in Germany.
World Gynecologic Oncology Day
You were a part of the German translation and the localization of Olivia, right?
Prof Sehouli
Absolutely. Olivia is really a very, very helpful platform, and many experts on the field, and even our experts with life experience with ovarian cancer have been involved.
It's not always that you have to read everything, but it's good to have access and even to use this information to stimulate the doctors.
I hope that some doctors are listening to us today, because even they have to look at these materials for women with ovarian cancer, then you can even strongly recommend these materials better.
At the end of the day, it's not fair that a woman in one region got better treatment than another region. So we are humans. We are humans, we are world citizens. So the idea must be that every woman has the same right of best treatment everywhere. So this is why we do these activities.
World Gynecologic Oncology Day
I should mention Olivia is available in German, in Germany, Austria and Switzerland, and also in Italian and Turkish as well as English.
Prof Sehouli
I think it's very important, because in every country we have women who are not native speakers. And I think the critical issues regarding diagnostic treatment and cancer care should be open for every woman, independent of if she is a native speaker.
World Gynecologic Oncology Day
What are the challenges for immigrants to Europe, and Germany, who are facing an ovarian cancer diagnosis but don't speak German?
Prof Sehouli
First of all, I'm also an immigrant by definition, because immigrant definition is based on at least two generations. What I really like to underline that it's not always a minority. It's sometimes a majority.
And second, it's not individual elements. So if we talk about migrations, it’s a big topic. It's a question of experience in this specific healthcare system, it's a question of income, it's a question of education, and it's a question of language.
So it's not one box. Even in science, even in clinical practice, we have underrepresented groups.
For example, women older than 80, they are excluded from most of the clinical trials.
And second, they are some women with obesity.
There are some women with specific ethnicities.
There's maybe some woman with specific religions.
So what I only want to underline, and there's a key issue, differences between a woman who has lived 30 years now in Berlin—I was born in Berlin—and somebody coming from a war region as a refugee.
Differences even based on the laws. In Germany, if they are a refugee, in general they are not allowed to go in a cancer care program. It’s only for residents. That's similar in many other countries.
So [bias] is not always coming from the individual attitude. Sometimes it's even structured discrimination.
I don't want to blame anybody, but we have to be aware that diversity is a must in medicine, even in our society, and we have to discriminate between structural and individual biases.
I'm so proud that we, as ESGO for instance, will have a code of conduct of how to work with different diversities. Language is one of the key issues, but not the only topic.
I'm so proud and happy that ESGO is taking responsibility and this will be something I want to bring into the society, as president in my two years term: that we think much more holistically in women health, and we think much more about global health and diversity. So these are my personal topics, despite the fact that I'm an expert in in cancer treatments.
World Gynecologic Oncology Day
It sounds like that is very important for getting to the level where everyone can get the best care.
Prof Sehouli
I think everybody wants a personalized, individualized medicine, okay, but it started that we accept that we are humans and that we are maybe sometimes similar, sometimes different. This is a part of personalized medicine.
World Gynecologic Oncology Day
Our campaign theme this year is stigma in gynecological cancers. Stigma and perceived stigma are another thing that is a barrier to women for receiving care. This is not necessarily something that's structural, but maybe something that they feel is within their family or within their community. What kind of stigma do you think that cancer patients in Germany face?
Prof Sehouli
A few days ago, a woman with ovarian cancer came to me with her husband. She was diagnosed with ovarian cancer. She went to her general practitioner, and said she suffered from abdominal pain.
The doctor did a CT scan, a computer tomography, and then he said, “Oh, it's ovarian cancer.”
So the husband asked, “So what we can do?”
And the doctor answered, “Nothing.”
So I think this is discrimination. Even if I'm a doctor, you cannot close all the doors and opportunities for a patient. It’s unacceptable. This is one example how patients are discriminated against.
It’s not always end-of-life treatment, right?
This is something, what we have to understand, there are new treatments. They have impact on overall survival, and we cannot exclude—and we cannot promise—anything, but we cannot exclude hope. And we cannot exclude and ignore evidence-based medicine, based on clinical trials.
And this is reason why I think this is our responsibility, to break this fake news.
Not to discriminate and not to exclude women with gyne cancers from their options.
It’s the decision of the patients, not the doctors', to say there's nothing to do.
World Gynecologic Oncology Day
She went on to find a second opinion?
Prof Sehouli
Yes, she came.
World Gynecologic Oncology Day
You mentioned earlier, in relation to clinical trials, that age was a discriminating factor, that women who are older and experiencing cancer symptoms are not included.
Prof Sehouli
We looked who has been recommended to go in clinical trials, and we have seen there were two groups who weren’t represented. It was patients with migration background and elderly women.
So we interviewed these patients, and it's not the fact that they refused, but they have been not asked by the doctor who selected who should go in trial and who not.
It’s sometimes, conscious, sometimes based on time resources, because it takes longer to explain somebody who cannot speak the language, or if you have to slow down if you have a woman with 80 years, it's important to talk directly, slowly, sometimes repeat.
It’s important to see that it’s Arab women who are excluded.
And again, obesity is another case. It's body shaming. [These biases are] not only in society. Every [bias] that happens in society, happens in medicine. There is always a reflection. It's a mirror.
Medicine should be fair and should not be judging. You are not a judge. You are in medicine, or in the medical field, and everybody should have at least the same or similar options.
This is the reason why we started, in Germany, a project of empowerment, diversity, equity in the healthcare system supported by the Mercator Foundation, where we try, in schools of nurses, of doctors, and even in hospitals, to create projects to change the whole care system.
Because it is true that women are very, very frequently ignored and have sometimes an inferior outcome based on discrimination and factors they cannot control.
World Gynecologic Oncology Day
Is there some advice that you would give to a younger doctor, a healthcare professional who's just starting out, and they want to work with gyn cancer patients? Is there some advice you would give them for how to reduce stigma and how to provide equitable care?
Prof Sehouli
The first thing always regarding discrimination or separation of humans is to reflect on him or herself. We are humans. We do make mistakes, and we have maybe impact from our childhoods, from the parents, from the environment, from the media. Take space to reflect on yourself. It's not easy, but it's crucial. It can also be done in dialogue with people you can trust.
Second is to use the arts. Writing, painting, whatever. You can even look to use a professional supervisor or a coach. Open your eyes to yourself.
Feel your emotions. If you talk with an elderly woman, if you talk with a woman who is fragile, observe your emotions and look over your own shoulder.
This is one is key—try to connect your heart with the heart of the patients. Patients are open. They are watching you, consciously and unconsciously. If I talk as a doctor with a patient in a case of cancer diagnosis, it's like hypnosis.
Try to evaluate your dialog, your skills, not with the intention of what you like to do, but of what touched the patient.
Third is, take your time to train communication. It’s not by God given that you can talk! You can train surgical techniques. You can increase your knowledge by reading. You can even train your communication skills, or how to deliver bad news. Breaking bad news—there are seminars.
We are working here in Berlin, at Charité, with actresses. They act specific roles for cancer, resistant disease, whatever. And then we can simulate the situation with a real patient, like a real patient, but at the end of the session, this woman will leave the room and will give up her role, and she comes back and gives you a critical appraisal.
And at ESGO we have some more topics in our library.
World Gynecologic Oncology Day
On the ESGO eAcademy?
Prof Sehouli
Yes.
And furthermore, be always—please!—honest and don't overload the patient with too much information.
Because at the end of the day, if you see a patient and you want to deliver the diagnosis that they have cancer, the patient falls in a paralysis, in general. She cannot listen to you anymore after two and a half minutes. She cannot smell, she cannot see, she cannot feel. So don't overload. Try to de-escalate. Try to distillate and bring the patient space. Don't talk too much.
Let there be silence. Try to delegate communication, not always on your own shoulders, but in a team. Try to work with advocates. You work with nurses and with relatives to divide the burden, and to empower the woman.
This is the key: It's not the communication, it's the attitude on the relationship, on a long-term relationship. This is the key, and communication is only an instrument to create this relationship with our patients.
World Gynecologic Oncology Day
Well, that was a master class already! Thank you so much for that.
September 20 is World Gynecologic Oncology Day. I encourage everyone to get involved--I know Professor Sehouli will! I look forward to seeing what he does at Charité and through his other organizations this September!