BRIDGING SCIENCE AND EXPERIENCE: THE IMPACT OF THE CONSUMER ADVISORY PANEL

Why were you interested in getting involved in research or advocacy as a consumer?

“As someone with a lived experience, I participated in a clinical trial myself, and I guess that stoked my interest in research. And so, I wanted to become part of the Consumer Advisory Panel to give patients a voice and ensure better outcomes for future generations.”

“I’m Merryn Carter, a member of the Breast Cancer Trials Consumer Advisory Panel, and my breast cancer was diagnosed in 2010 as what’s known as HER2-positive early breast cancer. And luckily it was treatable by a drug called Trastuzumab, which is proving to be incredibly effective for a lot of women.”

“So here I am speaking to you in 2024, 14 years later. Where without that drug, that would have been very unlikely. And I guess that’s one of the main reasons I decided it would be great to give back by helping Breast Cancer Trials from the consumer perspective and encouraging people to do drug trials.”

What does someone need to do to be involved in the Breast Cancer Trials Consumer Advisory Panel?

“To become a member of CAP you don’t necessarily have to have been participating in a clinical trial. It’s more that you’ve had a lived experience of breast cancer, and you are an advocate for patients,” said Leslie.

“It’s about representing the broader community and all of those diagnosed with breast cancer and not necessarily your personal situation. But it’s a really important role that allows us to work with researchers to design and run clinical trials that are going to improve outcomes for patients. So, if they’re interested in joining the Consumer Advisory Panel, they could either talk to their surgeon or oncologist.”

“They can go on the Breast Cancer Trials website and there’s a page on there that has the details about the Consumer Advisory Panel, but also how you go about joining the panel or applying to join the panel. And it’s an expression of interest process. So, if you do go on that platform, it will tell you about the next steps on how to become involved.”

“My name’s Laura McCambridge. I was diagnosed with breast cancer when I was 31, three years ago. I had a lumpectomy, I underwent chemotherapy, and I also had a preventative mastectomy in the end. And now I’m about a quarter of the way through my 10-year hormone therapy treatment.”

“So, I was a patient on a clinical trial as a part of my breast cancer treatment. I was on the Breast MRI Evaluation Trial that was run by Breast Cancer Trials, the organisation. And as a part of that I found out that there was an organisation that was running breast cancer trials in Australia and New Zealand. And I wanted to be a part of that.”

“So, I received an email from Breast Cancer Trials asking if people would like to be involved in a fundraising, content creation part and I put my hand up for that and I did some video and photos with the Communications Department, which was amazing. And as a part of that, I also then got the opportunity to be on the panel at one of the Breast Cancer Trials Q&A and attend one of their Annual Scientific Meetings.”

“At that meeting, I met Leslie, who is the lead of the Consumer Advisory Panel. And once I’d met her and I found out a little bit more about what CAP does, I wanted to be a part of it. I put my hand up at that point.”

Why is it so important to have consumer involvement at all stages of the clinical trials process?

“Because if the trials don’t recruit sufficient participants, then they can’t prove whether the drug is effective or not. So, in order to be attractive enough for someone to take the risk with an unproven drug, you have to think from the participant’s perspective and that’s our role as consumers, is to think of things like how often might you have to visit the clinic? What are the likely side effects of the drugs that you’re putting in your body? How often will I be monitored?” Merryn said.

“So, it’s important to have the patient perspective in there when the trial’s being designed, so that we can reassure potential participants that they’ll be really well looked after while they’re on the trial, and they won’t be asked to do things that are too onerous.”

“Hi, my name is Naveena Nekkalapudi, and I was diagnosed with triple negative breast cancer on Christmas Eve 2014. I then underwent six months of treatment, which included a lumpectomy and axillary clearance, which is basically surgery with the removal of the lymph nodes in the armpit and six months of chemotherapy, which included Doxorubicin and Taxol followed by six weeks of radiation therapy.”

“It is important for Breast Cancer Trials to have consumer voices as a part of organisation. As we provide insight into the patient’s lived experience, we also can provide a fresh set of eyes when we come to designing the trial, but then also implementing the trial.”

“For example, we can explain to researchers that a certain exclusion is unfair or not necessary, or had they thought about including that cohort of people because they would benefit from the trial, or we can simplify the language of the trial documents so that it’s easier for patients to digest, especially when they’ve had a cancer diagnosis and therefore are struggling physically, but more importantly, mentally and emotionally.”

“It’s so important to have patients involved in the protocol development of a trial right from the very beginning, because patients are the only ones who are able to say, I would love to join this trial, or there’s no way that I would take part in that. To give feedback on the areas that would be interesting to a patient, and other areas that would just be an absolute no go,” said Laura.

What do you enjoy most about being on Breast Cancer Trials Consumer Advisory Panel?

“I love being on the Consumer Advisory Panel because I get to work with likeminded consumers, but also likeminded researchers. To provide cutting edge treatments or trials that are necessary for people to live longer or have better outcomes or have better quality of life. And it makes me happy to see the impact I’ve made on a patient’s life and a person who’s followed me on the breast cancer journey, if I can call it that,” Naveena said.

“It makes me feel happy that I’ve made it through, and even if it’s a 1% difference, it’s improved their life by that much.”

“Yeah, so I’ve always been involved in research as a part of my working life. I have a research master’s, so I’ve always kind of been in the field. I was working as a study coordinator at a few different hospitals, but in neurology, specifically stroke and dementia trials,” Laura said.

“And then after I had my breast cancer diagnosis, I thought maybe I can combine this lived experience with my professional experience in research. And CAP was kind of the perfect way to join those together.”

When someone is diagnosed with cancer and they often receive a lot of information about their diagnosis, has this been reviewed by someone on a Consumer Advisory Panel?

“When a patient is presented information about a Breast Cancer Trials clinical trial, every document would have been reviewed by a Consumer Advisory Panel member or members, and they would have been simplified and made digestible as much as is possible. We also recommend that researchers consider alternative ways of sharing the information,” Naveena said.

“So not just written, but perhaps in a video or in a diagram so that people find it easier to digest when they have different ways of absorbing information.”

What types of roles can consumers have in research?

“Within clinical trials research and in particular Breast Cancer Trials, some of the roles that our Consumer Advisory Panel members are involved in, we review protocols, and informed consent documents to ensure that patients are the focus of that clinical trial.”

“We are also involved in grant applications for clinical trials, steering committees for the running of trials, fundraising for the group and marketing as well.”

“So once a year we attend the Breast Cancer Trials Annual Scientific Meeting where we sit through three intense days of the most erudite scientific medical research that kind of makes your brain hurt as someone who’s not from a scientific background,” Merryn said.

“But it’s really stimulating and, you know, we’re a group of people who talk through what it means for us as consumers all the time. So, we’re very supportive and the researchers are incredibly open to us and, you know, there’s no such thing as a dumb question.”

“We feel very supported. We can ask outside of the sessions if we want to, so that’s an amazing experience. But then in between times, I guess it’s almost like our real role, is when they’ve got documents about trials that are coming up, like the very beginning where a concept paper is developed with the idea for a trial.”

“And we look at things like how we think it might run. The drug we’re thinking of investigating, or it doesn’t have to be a drug, it could be surgery or radiology or whatever other kind of intervention, but from the very beginning they’ll do a concept.”

“We will then say what we think about that concept from the consumer perspective. And then the big, long documents, the protocols for the trial are developed, that’s when they design the trial, and you get all the details of how the trial would run.”

“They can be long, really intense scientific documents. So, it takes quite a bit of time. It’s incredibly rewarding to be part of the process, but it does take time and effort to understand as much as you can from a lay perspective. You’re not expected to be a medical scientist.”

“So, reading through these documents from a perspective of constantly thinking what would this mean to the participant? What would this mean to the patient? And then we give our feedback to the researcher and hopefully we can sometimes, and we do, see that they tweak the trial so that it’s kinder to the participants.”

Can all ages be involved in the Consumer Advisory Panel?

“Yes, absolutely. As a young woman, I felt welcomed into the group. We are lucky that we have a varying age difference between, between all of us because we’re all coming from different stages of life and we all have kind of different passion projects and different interests, which is good,” Laura said.

What would you say to someone who is thinking about participating in the Breast Cancer Trials Consumer Advisory Panel?

“I’d say they’re joining a great bunch of women who really enjoy working together. That if you enjoy using your brain and learning new things, and if you’re curious about the science behind drugs and treatments used for breast cancer, then it’s a really rewarding thing to do,” Merryn said.

“If you’re interested in joining CAP, I would say absolutely go for it and get some more information to see if it’s the right fit for you. We have an online expression of interest form that you can fill in, which we can then review. And then the process from there is that we have a Team’s interview or a video conference interview to get to know you a little bit more and so that you can ask questions about what we do at CAP,” Laura said.

“You don’t need a referral from a medical professional. You can just reach out on your own, but if your oncologist is involved with Breast Cancer Trials, that’s also a really great way to find out more information about the organisation and about CAP as a group.”

“It’s a lovely group of people who take part. I love being able to use my brain and deeply think about things that might be important for a patient taking part in a trial. I love being able to use my knowledge about what makes language accessible, so that when we’re writing the consent forms or when we’re doing the videos for the e-consent modules, I can really use my skills to make the language accessible so that people can understand it.”

“The Consumer Advisory Panel welcomes applications from anyone who’s had a lived experience of breast cancer in Australia and New Zealand. And the more the merrier, and the more diverse the better. Because while we’re all likeminded in our aim to do good for people, we also bring our different perspectives. Which is what I like, because I get to learn from my other fellow consumers,” Naveena said.

“It would be great to get even more diversity in there so that we all get to learn about how other people’s lived experience can have an impact on their lives.”

If you experienced someone saying that trial participants are ‘guinea pigs’ what would you say in response?

“So, I think that from the media and from news cycles, when you hear the term clinical trial, you think that you’re going on a new intervention versus nothing, versus a placebo. But for the huge majority of the time, what you’re doing is that taking the gold standard treatment that already exists and then putting another option, which could be even better than the gold standard,” Laura said.

“So, you’re not getting the drug or nothing. You’re getting what already exists, or something that could be even better. So, there is an element of that being experimental, but you’re not a guinea pig, it’s so well thought out, it’s so research based from the very beginning, and it’s also being tracked over time so carefully.”

“So, they don’t just create the trial, recruit patients and then leave it be. Like, there’s all these interim analyses of safety to make sure that the new intervention is safe and it’s not at a detriment to the patient.”

“So, you’re not being a guinea pig. I hate that term. I feel like you’re lucky to be on a clinical trial because you’re getting an opportunity that other people don’t get, rather than just throwing your body on the line and not getting any benefit,” she said.