Patient Advocates Emerge as Key Stakeholders

Bettina Ryll, MD, PhD; Deborah A. Maskens, MA


October 21, 2015

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Bettina Ryll, MD, PhD: Welcome to this edition of Medscape Oncology Insights on patient advocacy, coming to you from Vienna at the 2015 European Cancer Congress (ECC).[1] My name is Bettina Ryll, MD, PhD, and I am a patient advocate and founding member of the Melanoma Patient Network Europe. I am also chair of the European Society for Medical Oncology (ESMO) Patient Advocacy Working Group. I am here with my friend Deb Maskens, vice-chair of the International Kidney Cancer Coalition, from Canada. Welcome, Deb.

Deborah A. Maskens, MA: Yes.

Dr Ryll: We are here in our function as patient advocates, and that means that we are not simply patients, but we are actually here as advocates. I think that's an important distinction. Don't you agree?

Patient Advocates: The Informed Voice of Patients

Ms Maskens: It's a really important distinction, Bettina. I am a kidney cancer patient, but I'm not here for my own care. I'm here as the voice of a couple of thousand patients in Canada and across the world through the International Kidney Cancer Coalition, which is based in Amsterdam. It is important for oncologists to understand that we are not patients in the room. We are there representing the patient voice.

Dr Ryll: I would fully agree with that, and it is something that is often misunderstood, because many of us are actually experts in what we are doing. Would you agree?

Ms Maskens: I think there is a great mystery about what patient advocates really do. Sometimes I explain that we have a role with health technology assessments in our various countries; we meet with governments, drug plan managers, and regulators. We have a core role.

We have emerged as a new stakeholder.

Many oncologists, I don't think, quite appreciate that this is an emerging role and that we have emerged as a new stakeholder. We are sophisticated patient advocates who understand the healthcare system that they are in, and who also need to understand the scientific developments that are happening in their disease area and to introduce those scientific developments to the patients, so that we can get innovations to the patients in a faster manner than we currently are.

Dr Ryll: I agree with you. The meeting has just begun, and there is a dedicated patient advocacy track here in Vienna at the ECC. What's your impression so far?

Ms Maskens: I'll say that coming from an American Society of Clinical Oncology (ASCO) perspective, this is truly impressive. So, congratulations to everyone at the European CanCer Organisation (ECCO) and at ESMO for bringing this together. It is amazing to see session after session of truly quality advocate education.

The only qualifier that I have is that I cannot be in two places at once. I came here primarily for scientific updates, to hear the research and to communicate that back to the patient community, but I can't be in the patient advocacy session [and the scientific sessions] at the same time. So, I'm forever running back and forth, and I know that I'm missing things. What do you think? I see you running the same hallways that I'm running.

Advocates Accommodated, but Not Yet Integrated

Dr Ryll: I am having the same problem. I'm here for melanoma information, and I'm obviously interested in finding out because this is the perfect place. Where else do you want to get updates firsthand? We report live from the meeting. We have a blog, we tweet, and we are on our social media forum because our patients want to know on the spot—and in a disease like melanoma, patients do not have time, and they want to know on the spot. So our ambition is real-time reporting from meetings. A big gathering like this would be the perfect opportunity to actually increase the exchange between our side of the world and the oncology community.

Ms Maskens: Absolutely, Bettina. We don't want to be in a separate room. We don't want to be in a separate building. To some extent, I believe that advocates have truly been accommodated at this meeting, but we need to be integrated.

I'm looking forward to seeing ECCO take this one level further, so that we are integrated into every main session and make it be absolutely standard practice that there be a patient on the panel, so that the patient voice is represented. I really hope that when there's a scientific presentation, the speaker will stay back for a few moments and speak to the advocates, because we are the ones who are taking that information out to the broadest number of patients.

Dr Ryll: From that perspective, we can say that with this ECC, this has already happened to a degree because we have indeed had sessions that are cochaired by advocates.

Ms Maskens: Some, but not all.

Dr Ryll: That is absolutely true, but we now have advocates in the main tracks, and I do think that for us this is a huge step forward. What do you think we could do even better, as we are both very keen on improvement for our patients? What would be your dream?

Ms Maskens: I would love to be able to stop chasing the oncologists down the hall. "Please, Dr So-and-So, can I just have two questions from your presentation," because literally, that is what we're doing. I recognize that for oncologists, this is an important opportunity to meet with their peers, but it's a really important opportunity for us to integrate the advocates together with the oncology community. So, that would be key. If we could just ask them to please hang back, let's get some questions, because we're going to get that information out as quickly as possible. That's one piece.

I think it would help if we can make it even easier for patient advocates to attend these conferences. There have been some great fellowship programs, some travel assistance, but it is still really expensive for a lot of patient advocates. Most of us function as volunteers, so we are taking time away from whatever we would do. Sometimes people are taking vacation days to be here, and often they are dipping into their own pocket to pay for their expenses. So, anything that we can do would help.

I also look at the patient advocacy booths in the exhibit area, and it's wonderful. This year, we see them in the middle—which is terrific, but we really are the poor cousins in the exhibit hall. I would love to see more of a focus on what we can do to get more oncologists through the patient advocacy booths so that they can learn about some of the initiatives that we are taking on at the pan-European level and the international level. I think they would be truly impressed, but the lure of the bigger booths with the nicer carpet and the cappuccino machines is there.

Dr Ryll: This matches my impression. There is a lack of awareness of who we are and what we do, because, as you said, we look like the poorer cousins and don't have the flashy outfit—definitely not in Europe, where advocacy runs on a tiny budget. We are advocacy on a shoestring.

Too Few 'Events': Disjunct Between Data and the Human Perspective

Dr Ryll: I do think this translates in a general lack of awareness of the patient perspective. This is something I would like to discuss with you, something that has happened to me and which has greatly upset me. I was sitting in a presentation, and someone was presenting melanoma overall survival data and said that not enough events had occurred in order to make these data meaningful. For me, this was extremely painful, because I knew people on those curves personally, and they were those events. I felt there is a disjunct between data and the human perspective.

Ms Maskens: Absolutely. It's a simple fix. At the end of many presentations, presenters very quickly put up a slide that says, "We would like to thank the patients and the families." I would just like to remind oncologists that the patients and their families are not in the room. It would be one thing to pause on that slide and to make a sincere thank you. But I would actually like to bring that slide to the very beginning of their presentation, because if it weren't for patients—who are giving their time, their tissue, and their bodies for biopsies—we wouldn't have this research.

This conference is not about careers and resume-building. I think we do have to acknowledge right up front that this is about patients. There are many patients who have contributed to this trial research, and there are many patients who depend upon these results. So, I'd like to bring that forward and to make it clear.

We can do our jobs as advocates to continue to tell patients how much appreciated their involvement is in clinical trials, and how desperately we need them to look at clinical trials and consider joining them, so that we can increase the rate of participation worldwide. That would be a simple fix.

We know that oncologists are deeply appreciative because we see them on an individual level, but if they could make that first and foremost in their presentations, that would go a long way to expressing that sentiment.

Dr Ryll: As advocates, we are about action. What do you think we, as the advocacy community, could do or should do to push for greater visibility and integration?

Ms Maskens: It's interesting. We can sit in our patient advocacy track and look around and say, "Well, the doctors aren't here." We actually had an excellent session the other day on shared decision-making. I think we can talk all day about how much we believe in shared decision-making. It should be the oncologist and patient together making the treatment decision, but if it's just patient advocates talking to one another, we can say to one another, "Well, isn't that a shame that the oncologists are not sitting in the room."

The oncologists face the very same dilemma. They are over in the other building at their scientific sessions. One approach would be to say, "If the mountain won't come to Mohammad, then we have to go to the mountain." I would say, let's not sit in our patient advocacy room and bemoan the lack of physicians. Let's go into the physician room and continue.

Dr Ryll: Maybe we can also help them with their communication sessions on how to communicate with difficult patients, because that indeed exists.

Ms Maskens: Absolutely.

Dr Ryll: For me, this is the perfect example of communication that is not working. As advocates, we organize sessions on how to talk to your oncologist, and oncologists have sessions on how to talk to your patients. If we just talked to each other, we might actually make headway.

Ms Maskens: Absolutely. One area where I think we have a lot of value to provide to physicians is on how to advocate. There are so many physicians whom I work with on the international scale where we go to governments together, where we put some submissions together. So when physicians say, "But I don't do government advocacy. That's not my specialty," actually that's exactly what you do and it is what we need. You do it well. You have the credibility of being an oncologist, and so we want to do this work together with you.

But I think it is key to help to teach physicians how to advocate in strategic ways so that we have access. We don't want to waste money on clinical trials that aren't effective. We don't want to see patients sign up for trials that are not the ideal trial set up for them. We really want to work in partnership with oncologists. I think when it comes down to access to innovative medicines in Europe and across the world, we have to work in partnership, and it's not okay for the oncologists to expect for us to do that alone. We need to do it together.

Dr Ryll: You are in Canada. I'm here in Europe. I would be interested in your perspective. I think that when talking to our oncologists here, many of them are not aware of the amount of service that an advocacy group actually provides to patients and the type of support. I routinely find that when I pass on what patients are discussing on the social forum, I am met with great astonishment from oncologists that patients actually have such a need. I believe we are providing a valuable service to the healthcare system. We could be even better if we got more input from our medical community, especially the oncology community. Is that similar in Canada, do you think?

Ms Maskens: It's very similar. The healthcare system in Canada is quite European in its origins. The patient advocacy group plays a key role in helping patients navigate and understand new scientific discoveries.

Just this week, we have major announcements. There are press releases. The lay media picks up on a lot of these releases, and sometimes they get it wrong. That's a real danger for us, because our patients are picking up the newspaper. Sometimes you read a headline that says, "50% of terminal cancer patients will be cured." Wouldn't we all love that to be true? Unfortunately, it's not true.

So, part of the role that we play is to help patients understand new discoveries in the context of what we already have. It may be within the context of a treatment that they are already on, because one of the last things we want is for a patient to feel that perhaps they are on something that is inferior to a new discovery and to have that doubt in the middle of the night that maybe this isn't working for me because of a headline. It's a really important role that we play in helping patients contextualize new discoveries and have an informed and empowered discussion with their oncologist at their next visit.

Dr Ryll: This touches on an initiative by Ben Goldacre,[2] who did an analysis finding that these headlines that you mentioned are often present in the original scientific publication. This is an advocacy effort that we can take forward to the scientific and the oncology community to be very careful with their speculation, because I do think that in other research, scientists appreciate the "might" and the "may," but this is not what the media picks up. Our patients come to us, and I'm sure they also take it back to their oncologists.

Someone told me that the worst thing is to take away hope from a patient. We all have to make an effort that reporting in the general media is adequate and providing appropriate hope, but not something that cannot be sustained and in the end is detrimental for our patients.

Ms Maskens: Absolutely. Think about something as basic as communicating the results of a negative trial. Imagine that patients have been on a trial. Maybe they are still on it. They have given their time and have put their hope in this trial, and now the results have come out. This trial was negative. Imagine how that feels to a cancer patient and to have a life-threatening disease. Part of what we need to do is to help them understand that you did not fail the trial. The innovation didn't live up to expectations, but we are together moving the science forward.

It is a really key discussion, because we have devastated patients at home when they get the wrong message, and we have many patients who start to question their current therapy even though they may be on a very effective therapy for them. Part of what we need to do is to reinforce—to keep them planted one foot in hope and the other foot very firmly in reality. Some of the advancements that we see at this meeting may not actually be rolled out into common practice where I live for 1-2 years. We have to understand that these treatments are not US Food and Drug Administration (FDA)-approved and they are not reimbursed in many countries.

So, there's a real barrier there. All patients are on a rollercoaster, but part of our job is to help them understand where we are on that rollercoaster at this moment.

Dr Ryll: To sum up, you have mentioned a number of points that are heavily based in science. You also mentioned that we are involved in health technology assessment services. We are involved with regulatory agencies. I do think that advocacy, in my opinion, is evolving towards a more technical, more sophisticated advocacy than we were used to in the past, when patient advocacy was mainly perceived as supportive.

Ms Maskens: Yes, and that is great.

Dr Ryll: We still need fundraising, but I do think there is hope for growth on the horizon. Our hope is to have a dedicated advocacy concept, not only here in Vienna but for all major meetings worldwide. I hope you join me in that.

Ms Maskens: Absolutely. Patients included in all major meetings worldwide is where we want to be. Let's hope that this sets an example and we take it even further at future medical congresses.

Dr Ryll: Thanks for joining me here today. As always, it's a pleasure. And we would like to thank the audience for joining us in Vienna today.


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