In this episode

Stage-four prostate-cancer survivor Alfred Samuels joins Kevin from Merakoi Voices to explore what happens when raw patient storytelling collides with hard clinical data. Alfred takes us from the night morphine couldn’t touch his pain, through a miracle PSA drop on the STAMPEDE trial, to becoming an award-winning filmmaker and author who now educates clinicians and inspires men worldwide. Together they unpack why “509 → 0.1” only matters when listeners feel the human stakes behind those numbers—offering a playbook for anyone creating content, trials or therapeutics with patients, not just about them.

Guest Bio

Alfred Samuels – UK security-consultant-turned patient advocate, author of Invincibility in the Face of Prostate Cancer, director of the two-part documentary A Survivor Amongst Survivors (47 festival awards) and Cancer Research UK Ambassador of the Year. Diagnosed with metastatic prostate cancer in 2012, Alfred became a “super-responder” whose lived experience now powers global awareness, diversity outreach and patient-led research design.

Key Topics

• From PSA 509 to < 0.1: translating stats into patient experiences
• Turning diaries into books, and books into an award-winning documentary
• Pushing back on “TV-worthy” edits: keeping the human face of cancer
• Co-creating content with caregivers: Grace’s role as first-line editor
• Reaching Black men and other under-represented groups through authentic narrative

What you need to know

About Merakoi

At Merakoi we see patients as co-creators, not numbers. Our mini-community model embeds diverse patient experts alongside life-science teams to shape trials, content and digital therapeutics from concept to launch. Ready to swap one-dimensional journey maps for stories that move hearts and markets? Let's chat!

The Complexity of Patient Journeys

As projects progress from insights to solution co-design, we look to collaboratively address unmet needs with continuous input from patients, physicians and industry stakeholders. One of the key challenges when designing solutions is tailoring the experience to each person’s needs. Building mini-communities of patients and other stakeholders with shared experiences around a specific condition can provide valuable support and understanding. 

Given the complexity of patient journeys, there is no one-size-fits-all approach that will work for everyone. Solution design often utilises a modular approach to deliver a personalised experience through self-segmentation. However, these modules need to incorporate behaviour change goals and the diverse needs of those adopting the solution. Failing to address this early on in the process leads to challenges in recruitment and retention, ultimately missing the opportunity to positively impact the lives of patients.

Segmentation: A Challenging Endeavor

Let’s look into an example from an ongoing project to illustrate the complexity around segmenting patients for solution co-design. For this project, we are developing a digital therapeutic for people at moderate to high risk of stroke. We mapped hypertension across various disease pathways - from essential hypertension to comorbid conditions where hypertension is present and diseases where acute hypertensive episodes are likely.

Collaborating with a diverse mini-community representing potential conditions associated with hypertension, we focused primarily on the clinical journey while also incorporating areas where patients seek support and information outside the clinical setting. Utilising a train map analogy, we identified areas of moderate and high stroke risk to understand the points in the journey where a solution could benefit patients and their care teams.

After mapping the patient journey, we moved to segmentation, to better understand those patients who were at the highest risk of stroke. We segmented by disease, number of comorbidities, access to specialist Centres of Excellence of Comprehensive Stroke Center, age, smoking status, treatment type and history of stroke. After aligning on the priority segments, we needed to understand their needs and concerns around disease management and uncontrolled hypertension.

Usage data or KPIs from existing digital solutions or patient support programmes would also need to be layered into the segmentation data. As you can see, this process can become quite overwhelming. Is there a simpler way to segment which could deliver equally effective results

PAM: A Simpler Segmentation Approach

It is widely accepted that people who have the knowledge, confidence and skills to manage their disease have better health outcomes than those who take a more passive approach. Highly activated patients living with long term conditions are more likely to engage in positive health behaviours and manage their disease, and their health, more effectively than those who have low levels of activation. 

The Patient Activation Measure (PAM) is a framework is one of the foundations of personalised care adopted by healthcare systems in Germany, Denmark, Japan, the UK, Canada and others.

Benefits of the PAM Framework

It’s easy to see how the PAM framework could be useful in moving patients from lower levels of activation to higher ones by empowering them with the knowledge and confidence they need to self-manage their disease. Roughly half of all people living with a disease could be in PAM levels 2 and 3, enabling you to address larger segments through your digital solution, PSP or digital therapeutic.

PAM in Practice: Solution co-design

In a recent oncology project, where detailed patient data was lacking, we swiftly adapted by employing the PAM framework to create personas based on actual cancer patients. Engaging in sessions with mini-communities of cancer patients enabled us to gain valuable insights into the unique needs and challenges of people in each activation level. Insights were utilised to drive content planning and improve experience design , and create additional modules that had not been previously considered by the client team.

Olivia (not her real name) was a PAM level 1 patient living with Non-Hodgkin’s lymphoma. Everyone in the mini-community could empathise with Olivia - she was overwhelmed, disconnected from her disease management, had low levels of knowledge and few coping skills. People who are diagnosed with cancer typically start here, and it is very difficult to recruit or retain them onto digital solutions, apps, or patient support programmes in this stage. 

During our sessions, we explored what Olivia would need in terms of resources, support / connection, appointment and side effect management. But we also looked at how that information could be presented in easy to digest formats that would help Olivia understand her disease at a time when she is ready to learn. We explored mental health concerns and how peers her own age who had been through a similar journey might be needed to help Olivia come to terms with her cancer and accept it.

We repeated the process for our other personas in levels 2 to 4, taking the mini-community through each and asking them to walk in the shoes of each person to identify gaps and opportunities for the client team to meet the needs of each patient segment.

Enhancing Insights with Additional Cohorts

In this example, the cross-indication mini-community was able to walk in the shoes of other patient segments, providing valuable insights into their needs and challenges. Many members of the mini-community had been in similar situations throughout their own patient journeys or knew and interacted with peers in their communities who fit the specific segments and personas being explored. This shared experience allowed for a deeper understanding of the unique perspectives of each patient segment.

While the cross-indication community provided a strong foundation for understanding patient needs, including additional cohorts in the mini-community would allow for further exploration as the client moves from concept into solution design. These additional cohorts could include people with a specific tumour type, those on a specific treatment or type of treatment, those with an oncogene mutation, or those in a specific cancer stage.

By incorporating these specific cohorts, the team can gather targeted insights around the particular challenges the solution aims to address, ensuring a better fit for the intended patient population. For example, people living in rural areas who do not have access to a multidisciplinary team may struggle to share knowledge with physicians located in different clinics or hospitals. To address this challenge, the team could create a cohort that includes nurses from multiple specialisms involved in the patient's care, allowing them to understand the complexities patients face when being managed by both an oncologist and a nephrologist.

These additional cohorts would provide valuable feedback on the solution design, user experience, and content, enabling the team to make informed decisions and adjustments that improve the overall fit and effectiveness of the solution. By engaging with patients who closely match the target audience, the team can ensure that the final product addresses the specific needs and preferences of the intended users, ultimately leading to better adoption and outcomes.

Evidence shows that if we don’t address the levels of activation in people living with a disease, they are unlikely to benefit from the interventions we provide; they may not take their medications as prescribed, they may miss appointments, their conditions may progress faster, and they may develop additional comorbidities that could have been prevented. By focusing on activation as a driver for the solutions we create, we can provide a personalised experience that empowers them to better manage their health, and get better outcomes.

Ready to deliver a more personalised experience that meets the needs of patients? Contact us to learn how PAM plus mini-communities can elevate your patient interactions.

About Merakoi
Merakoi partners with health and life sciences companies to build mini-communities that guide product development through continuous user insights. Our network of patients/advocates and proprietary community platform enable engaging, longitudinal co-creation between users and developers. The result is human-centered solutions that resonate powerfully in the real world.

Related reading: our primer on patient co-design

Advances in biomarker discovery are helping scientists learn more about the drivers that cause many types of cancers to grow. Neurotrophic tyrosine receptor kinase (NTRK) gene fusions are an actionable biomarker for cancer therapy found infrequently in common tumor types but found frequently in certain rare tumors. 

To help us understand more about this topic, we recently hosted a LinkedIn Live discussion with Susan Spinosa, President of NTRKers, a global, non-profit patient group, founded by patients and loved ones living with NTRK gene fusion cancer. Susan was joined by NTRKers Vice President, Sandra Montez, Research Nurse RN. 

Susan was diagnosed with thyroid (follicular variant of papillary) cancer in 2004.  She progressed through multiple cancer treatments until it was discovered she had NTRK positive thyroid cancer in 2018 through genomic sequencing.  In 2019 she founded the NTRK Support Group on Facebook which has grown to become a global, non-profit group of patients and loved ones living with NTRK gene fusion cancer, and supported by leading clinical experts. 

Sandra is an experienced Research Nurse Manager who has worked in research in Australia, the UK and the United States. She has extensive experience across all Phases of clinical trials, but has a focus on early drug development and Phase I clinical trials and specifically in genomically matched clinical trials. Sandra has spent the last eight years as a manager at the University of Texas MD Anderson Cancer Center Department for Investigational Cancer Therapeutics (Phase I Program). 

In this post, we share some highlights from our fascinating conversation with Susan and Sandra. The full video replay of the conversation is available on our YouTube channel. 

We began our discussion by asking Susan to share her journey from diagnosis with thyroid cancer in 2004 to 2017 when she was diagnosed with NTRK.

We learned that Susan was originally diagnosed with a common type of papillary thyroid cancer that has a high cure rate. Unfortunately, four years after receiving her initial diagnosis, her tumor marker went up and she was diagnosed with a recurrence of thyroid cancer, as well as a tumor in her cervical spine. She was treated with radioactive iodine, which is the traditional treatment for thyroid cancer. 

Susan’s primary concern was some nodules that grew on her bronchial branch, which prompted her to seek a second opinion. Because her cancer was getting more aggressive, the doctor recommended genomic testing before giving her any more treatments. Up to this point, Susan had repeatedly asked her primary treating physician to test her for BRAF mutation, a common thyroid cancer biomarker. Only after seeking a second opinion did she receive genomic testing. 

The result came back positive for NTRK. Her doctor told her, “Hey, I have good news and bad news. The good news is you have NTRK fusion cancer which is rare, but there's a pill that will work very well.”

Susan started a clinical trial in August 2018, and has been doing well on it.

Turning Online For Information and Support

At the time of Susan's diagnosis, there was little information available about NTRK. “Luckily, we now have the Internet,” she told us. “But even that was limited and I searched high and low on social media. I was lucky enough to find about a dozen other people all over, because they can be anywhere. I messaged them on Facebook and I said I want to connect with other people and they replied back immediately, saying I'm so glad you found us”

Susan’s next step was to set up an NTRK specific Facebook group - the first of its kind. Although she already belonged to online thyroid groups, she explained “because NTRK is found in different sites within your body, not just thyroid cancer, you really lose your specific cancer type relationships.  You need to expand that and connect with people who are the same as you.”

The experience of cancer would have been even more stressful without this online community, she explained.  “You know, you're taking a rare drug and you're so spread out across the globe. You're so isolated. And I always say it's a lonely journey. I don't feel lonely anymore because I feel like I have tons of friends all over the world now that I can relate to.”

Susan was also keen to emphasise the benefits of the online community for parents of children with NTRK.  “A lot of these parents didn't even realise what their child would be going through and how they would feel on these drugs,” she explained.  “So now these parents can relate to their children better and understand what they're going through. I feel like we're helping both parents, caregivers and the patient.”

NTRK: The Clinical Trial Experience

We then heard from Sandra, who was working in Phase 1 drug development at MD Anderson, which is the world's largest drug development trial unit. In 2014, a small biotech company was trying to run a clinical trial focused on NTRK, but no one really knew anything about it. Quite by chance, the first patient was recruited to the trial.  A completely unexpected event occurred at the six-week scan mark. PET scan results showed that the patient's cancer was no longer active.

“And we were completely shocked and flabbergasted,” Sandra told us, “because it's something that you don't really see in advanced cancer patients. And then the same thing happened another three or four times with the next few patients we had been lucky enough to enroll. And so that then led to another Phase 2 clinical trial, having this small subset of patients. At the time it was nearly 100% response rate, which is absolutely phenomenal. And because we had such a niche market of patients, we really became the world experts on NTRK fusion cancer.”

Sandra went on to explain that not only were these patients cancers responding, but the patients were feeling so much better. “They were able to go back to work, they were able to enjoy time with their families, do all the things that they weren't able to do beforehand,” she told us. 

In response to Sandra's point about recruiting patients from a small subset, we asked how participants were selected. “Pretty much through sheer tenacity,” she answered. “Unfortunately, when most patients seek out a Phase 1 clinical trial, their cancer is incurable. And so it's it's a difficult area to work in. And when you see somebody's cancer on a scan, basically all the activity disappear, you want to replicate that as many times as possible.”

Genomic Testing: The Right to Ask

Given her life-changing experience with genomic testing, we asked Susan why she thinks so few tests are being carried out.  “I think it's a combination of education in the medical world and also the patient world,” she answered. “We see some doctors not ordering genomic testing but the other hurdle that we have, especially in the United States, is coverage. And the tests were, especially when I was diagnosed, very expensive. They're coming down now. The hope is everyone gets genomic testing when they're diagnosed with cancer because it can change your life, but it's not happening. And that's our goal to educate and raise awareness of this.” 

In response to this same question, Sandra cautioned against making assumptions about patients, “especially if you're from a country where genomic testing might not be funded or reimbursed or, you make an assumption that somebody might not want to participate in a clinical trial based on their age, financial status, whatever it may be.”

“You know, we're all human. And even myself as a health practitioner, sometimes I make assumptions about patients and I really have to peel that back on myself,” she said.  “But I always think back to the fact that everything is the patient's choice. As a practitioner, your job is to provide patients with information, and it's the patient's choice what path they take.”

Why Self-Advocacy Is Essential

On the topic of self-advocacy for genomic testing, Sandra went on to say, “If you haven't been offered that choice and if you're not getting the answers that you want from your physician, there is no reason why you can't seek out somebody else's opinion. So often I see patients that are worried about offending their physician but really, patients need to advocate for themselves and not be afraid to do so.”

Susan agreed that it’s important patients speak up and advocate for themselves. “Don't be afraid to ask questions. And if you don't feel comfortable, go for that second opinion, even if it's to make sure that you have that peace of mind that you're in the right hands. I did multiple second opinions even before I got diagnosed with NTRK and for me, it was just the comfort of knowing that I was doing the right thing. It's your life, it's your family, it's everything.”

Sandra then underlined the importance of the relationship between a patient and their oncologist. “It's really important that you have trust and work together,” she said. “So make sure that like with any other aspect of your life, you surround yourself with people that have a common goal and don't be afraid to ask questions and to make sure that they're fully understood. Don't let assumptions be made based on your age, your race, your gender, whether or not you have children, whatever it may be. Everybody's acceptability for things like quality of life and how much treatment they want to have is their own decision. And that needs to be respected.”

Ending On A Note Of Hope

Throughout our conversation both Susan and Sandra sounded notes of hope.

“I try to stay as hopeful as I can,” said Susan. “ Being a patient, it's always in the back of your mind, going in for that test, going in for the blood work, going in for the scan. I've been on this drug for four-plus years, which iswonderful. There are people that are on it longer. But I also think the medical world is advancing so much with newer drugs. They're looking at mutations that are coming up or resistant mutations. So there's a pipeline. These companies are just developing these drugs. So, yes, I have hope that if this ever stops working, then I have the next game plan.”

“Before I started working in oncology, I was a trauma ICU nurse for nearly a decade,” Sandra said. “I've been in oncology for over a decade now. And what I will say is that I think in my lifetime I will have to go back to intensive care because I won't be needed in oncology any longer. And I do believe that that will happen in my lifetime. I have huge hope. This is the decade for oncology, and we will have an answer. I'm extremely confident.”

Learn more at: https://ntrkers.org

June is Immunotherapy Awareness Month, and we are so pleased to have the opportunity to sit down with merakoi patient expert, Oriana Sousa, to discuss her experience of treatment with immunotherapy for an aggressive form of ovarian cancer.

At just 22 years of age, Oriana was diagnosed with small cell ovarian cancer-hypercalcemic type (SCCOHT).  Following years of unsuccessful treatment, she tried immunotherapy and went into remission. Oriana was the world's first small-cell ovarian cancer patient to receive immunotherapy.

During our conversation, Oriana shared her story of diagnosis and becoming her own best health advocate, pushing for treatment with immunotherapy. She shared questions patients can ask their doctor about the suitability of immunotherapy as a treatment option and talked about creating an evidence base for more patients to be treated with immunotherapy.

Oriana began by sharing her story of diagnosis. She explained how she had been experiencing symptoms such as constipation, nausea, hair and weight loss, which intensified between October and December 2011. Even before this time, Oriana experienced symptoms that brought her to the ER, where doctors told her it was anxiety, stress, and urinary infections that were the causes of her symptoms. In September, even her gynaecologist had told her everything was normal for a woman of her age. 

It wasn’t until Christmas Eve, December 24th, that Oriana finally learned her diagnosis. It came as a strange sort of relief to finally have her symptoms validated, but at the same time, the enormity of that diagnosis was overwhelming—a life-threatening condition at such a young age. Oriana told us that it was the kind of gift that nobody wants to receive at Christmas. “And it was mortifying because nobody can expect at a young age to have something so severe,” she said.

After learning of her diagnosis, Oriana then needed to make a decision about treatment. Her doctor recommended chemotherapy, but Oriana sought a second opinion at a hospital in Spain with links to a US centre specialised in ovarian cancer. Because her type of ovarian cancer is rare, there was a scarcity of information about her treatment options. 

Oriana had heard about immunotherapy in 2010 through a media case in her home country of Portugal, which centered on parents seeking immunotherapy for their three-year-old daughter with renal cancer. They fought for the treatment against their doctor’s advice. This planted a seed in Oriana’s mind, and she asked about the possibility of immunotherapy for her particular cancer. Unfortunately, she received the news that she was not a suitable candidate for immunotherapy, so she returned to Portugal, where months later, she came across an online community which led her to think again about immunotherapy as the right choice for her. 

Oriana’s next step was to look for a private clinical appointment and request some new tests. Having experienced a relapse in October 2012, she made the decision to leave her original hospital and start treatment at another hospital. This time she completed a course of surgery, chemotherapy and radiotherapy. However, in 2014, Oriana experienced a further two relapses of cancer. 

All the while, she kept searching for answers in scientific journals. She leaned on the support of her family  and two good friends from college to help her through her diagnosis and treatment. Oriana also turned to the online community for SCCOHT, not only as a source of emotional support, but crucially as a source of information about new treatment options. The community also collaborated with a researcher, providing their tumour samples and other information to support the research team to find the mutated gene behind this cancer. 

Finally, in 2014, Oriana got to go back to her Plan A-immunotherapy. She started with radiosurgery and dendritic cells vaccine in Germany to treat the relapse. “Dendritic cells vaccine is a kind of immunotherapy,” she explained. It was my first approach with immunotherapy. But I relapsed again in 2015 and then I started a check point inhibitor (PD-1 ), the immunotherapy treatment, which led me to be in remission.” Oriana achieved complete remission in 2016 and has had no evidence of disease since that time. 

Does immunotherapy happen at a slower pace in oncology?

According to Oriana, the question of whether immunotherapy happens at a slower pace in oncology, is a super complex question to answer. “What we know is that a small percentage of patients can have a good response with immunotherapy,” she said “ but it is astonishing because we are even speaking of terminal patients recovering or having a long-lasting response when we know that they could not find remission with other treatments.” 

Outlining the need for a stronger evidence base, Oriana went on to say, “when a physician has a clinical question to answer, he needs to follow with evidence. What has been shown regarding immunotherapy is that we are still missing a lot of information to really understand who can and who can not effectively respond. It is more clear that this is an approach to be seen regarding the patients and not specifically thinking about the cancer type, and for that reason, nowadays it is possible to check some biomarkers through a blood test and learn if the patient could be a good candidate or not for immunotherapy.”

Oriana explained that although these biomarker tests can be a tool to support physicians in deciding on the suitability of immunotherapy, it is also known that these tests are not 100% reliable and it is possible that some people test negative for and could benefit from immunotherapy, and others that test positive don’t benefit. “It’s super tricky and I understand that there are a lot of other factors to be considered in this kind of decision and that is why evidence-based decisions are so important.”

Bringing the conversation back to small cell ovarian cancer, Oriana described how “this cancer was not expected to be immunogenic and I am in touch with several patients who had responses, and for this particular cancer, which is rare, it is not easy for me to accept that some of the SCCOHT patients do not even listen about immunotherapy as a treatment option.”

“When I decided on immunotherapy, I had no clue if it could work for me. I was lucky, I can’t deny that. I was in a life-threatening condition. I was not looking for science; I was looking only for a possibility to save my life."

What questions should patients ask their doctors? How best to bring up the topic with your doctor?

First of all, said Oriana, it starts with trust. “A patient really needs to feel comfortable trusting his or her oncologist. How can a patient feel he trusts his oncologist? I would say, in the same way we perceive we trust people in general. Some signals to have in mind:  the oncologist is open to discussing options; listening to the patient's needs; and admitting that the patient can look for second and third opinion or provide some referrals. Understanding if the oncologist is not open, is it because an option does not exist? Or if it is an option, does he/she think it is too complicated  to try? We cannot neglect the importance of communication, as it can be decisive in the patient's life. (I have met some patients who apparently did not have some option treatments discussed because the oncologist presumed that it was too expensive for the patient to pay. This can’t happen!)”

Oriana told the story of how she was in touch with a patient who had heard from her doctor that she couldn't do anything else to treat her cancer-just palliative chemotherapy. "I spoke with her in private and suggested she ask the doctor about immunotherapy. But her doctor's response was not positive and she was told she couldn't have the treatment in her country. Then the patient spoke with her insurance provider and learned that she could have immunotherapy. This led her to realise that, in fact, her doctor was not open to treating her with immunotherapy. So she found another doctor who told her how much she appreciated a patient being so proactive and told her she would support her in having immunotherapy and try to find some clinical trials for her. This patient ended up having immunotherapy, and although she ended up with a partial response, she is still alive today."

Oriana shared some helpful questions a patient can ask to start the immunotherapy discussion with their doctor. 

• Do you know of other options for treatments I can try? 
• Can you provide me with some reliable resources to try to get different information or support?
• Do you know if I can have access to better treatments in other countries? (In EU there are cross border policies)
• Are there any clinical trials I can participate in? If I don’t match the criteria, could a compassionate appeal be requested? 
• Are there any off-label drugs that I can try?
• I heard about immunotherapy as a treatment option for different patients. Can I try it? If not, why is that? 
• I learned there are some blood tests to check if I can be a good candidate or not for immunotherapy.  Can I be a candidate to have these tests?

What can patient advocates do to inform more patients about this option?

Oriana believes that patient advocates can provide reliable sources of information to other patients, supporting them to navigate the healthcare system and can also help patients to understand the information by reviewing content and providing a lay language summary to help understand scientific articles.

"Since I was the first patient in my community doing immunotherapy, but others were in a similar situation of relapse looking for options, we worked together in a way they could reach their doctors (3 patients were starting immunotherapy only a few months after me). I even sent some of my scans and MRIs to these patients for them to have something to show. We were trying to create evidence. Later, when these patients responded to immunotherapy, we were in touch with a researcher who was trying to analyse if our cancer could be considered immunogenic.”

Other ways patients can learn about and share information include: participating in conferences or webinars; being part of communities to know the unmet needs; and participating in advisory boards and projects to disclose these unmet needs and find solutions with multiple stakeholders—for example, engaging with pharma and researchers.

A message of hope

We finished our discussion on a note of hope. Oriana's hope is that others can find the right treatment as she did;  that others will suffer less and feel more supported. “That is my hope. And obviously, I guess all of us want to see cancer eradicated once and for all. But I guess that will not be a possibility. So I just want people to be able to access the best treatment and find a cure and support.”

To watch Oriana’s inspiring story, please visit our YouTube channel.

 Immunotherapy Awareness Month: In Conversation with Oriana Sousa - YouTube

In honor of Colorectal Cancer (CRC) Awareness Month, we were delighted to host Stage IV survivor and merakoi patient expert, Stacy Hurt, as our LinkedIn Live guest on Thursday, March 17th, 2022.

A 20+ year award-winning healthcare executive, Stacy has worked cross-functionally in physician practice management and pharma across sales, marketing, training, operations, customer service, IT, and human resources.

Along the way of building her career, Stacy also successfully navigated two devastating diagnoses: her younger son’s rare disease, which renders him intellectually and developmentally disabled and requires 24/7 care, and her own survivorship of stage IV colorectal cancer.

Stacy now serves as a global patient advocate and is a Patient Engagement Consultant representing patients as stakeholders in clinical decision making, policy formation, health IT user experience, and pharma/biotech drug development.

In this post, we highlight some of the key points from our discussion. It is just a small sample of the fascinating conversation we had with Stacy, so if you are interested in learning more, be sure to watch the recording on our YouTube channel.

On Being A Voice For Others

Stacy has recently been recognized by Medika Life as one of the Top 50 Most Influential Voices of Healthcare - an honor which Stacy was quick to point out is not about “tooting our own horn.” Rather, “being on that list just continues the work that we need to do to change our system for the better.”

“Being on that list is me representing patients and caregivers because that’s what I do every day. I’m just the medium. I'm just the go-between the patient and their journey and what they're going through and how they need our system to work better for them and me taking that to people who need to hear it and make the changes. I'm just continuing the work of getting these stories out there.”

The story of Stacy’s own advocacy journey began when her younger son, Emmett was diagnosed with a very rare chromosome abnormality.  It is a rare disease that leaves him nonverbal, nonambulatory, and in need of care 24 hours a day. Stacy had taken a break from her career as a healthcare executive to take care of her son’s needs, but then she was hit with her own diagnosis of stage four colorectal cancer shortly after returning to work.

This double blow to Stacy’s family’s healthcare precipitated a change in career, and she described for us how she has “continued forward to this sort of emerging career that I'm developing as a patient engagement consultant and really connecting the dots or closing the gaps between those who work in health care and the ultimate end-user, which is the consumer and the patient who are the recipient of those services.”

Peer To Peer Learning and Support

Stacy shared her experience battling the insurance companies to get her son the nursing services, medication, and equipment he needed. Her professional background stood her in good stead. 

“Because I worked in healthcare, I knew the verbiage and what you had to say to get these things approved and the hoops that you had to jump through to get these things approved,” she explained.So I sort of became an expert at appeals and then I started sharing that knowledge across the rare disease community.”

After being diagnosed with Stage IV cancer, Stacy found herself sharing her own survival playbook with the cancer community and giving advice to patients appealing insurance decisions.

From these beginnings, Stacy’s influence and impact in patient communities grew. And when she came through her cancer diagnosis and treatment, which she calls  “a complete miracle,” she began to look around and see that technology is going to change everything. 

“Technology is going to be that third voice in the room. When there's the physician and the patient, technology is going to be that third party in the continuum of care.”

“I think when you talk about that third voice in the room and people get a little freaked out by artificial intelligence. The perception is Big Brother. And this is part of digital literacy, health literacy, tech literacy for companies to take that extra step and make consumers understand that they can trust A.I., that it's a friend that is here to help your care and make your care better.”

“We have a huge trust problem in the world right now. We need to overcome that for technology.”

“You're only as good as what you understand about your plan and what you can execute. The doctor can give you the best plan in the world, but if you don't understand it, if you're not able to follow it, if you don't have the tools or the resources necessary to do it, to execute it, forget that plan. It is not going to happen.”

Addressing The Digital Care Gap

“If we're true leaders, then we're in the space that we are. We need to go 180 degrees to the space where we are not and figure out what those people's challenges are, what their problems are, and what their day-to-day life looks like. Assuming people have broadband access -  people are going to libraries and coffee shops to get on broadband. That's the reality in an underserved area every day. And taking a bus or a subway or other public transit to even get to that place of access. And if we're not taking that into account in every single solution we develop, we're missing it.”

More Than The Token Patient

One thing that Stacy is passionate about is that involving patients in healthcare design should never be tokenistic or transactional. It needs to go much deeper. 

Calling “upon every company out there to have a patient, someone who identifies as a patient on your executive team, on your leadership team,” Stacy pointed out that discounting or marginalizing patients due to perceived limitations means that “you're missing an entire perspective of lived experience.”

“The lived experience is not something that you can teach or have a one-day training program on.”

“That patient has to be part of your everyday workflows, your everyday drug development, policy development, strategy development within a company,” she said. 

This is not to discount making accommodations when needed, but these days more than ever it is easy to do so. 

“We now know we can do Zoom meetings, we can work from home and not miss a beat and be every bit as efficient,” Stacy pointed out. “So we know that's possible. But understanding that, yes, we do have disabilities. We do have certain things that we have to deal with. But those are easy to work with. Make the accommodations and make sure you're including that patient-caregiver lived experience voice.”

Citing the example of attending the annual ASCO (American Society of Clinical Oncology) conference, which extends free patient advocate registration, and also provides a dedicated lounge for patients, Stacy suggested that oncologists should visit patients in the lounge. “Come over and sit down and have lunch with us and talk to us. And let's just have a little fireside chat. And then at the oncologist lounge, have patients come in.”

Taking this suggestion further, Stacy presented us with a  scenario where “every panel on stage, instead of just having a patient get up and speak, every panel should be integrated. Every panel should be patients and oncologists and researchers up there talking together about what's important.”

This of course doesn’t just apply to conferences. It goes across the board. 

 “Every patient experience conversation should have a patient.”

Who Owns Patient Data?

When it comes to digital health, data is the fuel that drives the engine, but the question of ownership of patient data is one that is hotly debated.

Stacy is unequivocal that patients own their own data. “This is our data. And of course, every pharmaceutical company, biotech company, health tech company is capturing data. Patients need to know that. You need to tell us that you're doing that and you need to tell us what you're using that data for - if you're selling that data.”

Using the analogy of your best friend borrowing your car, Stacy explained “it’s okay that your best friend borrows your car. Your best friend needs a ride, has to get to an appointment and wants to borrow your car. Just tell me what you need it for. Don't make me look in my driveway and see it's gone. You need to have that conversation at the beginning.”

On the topic of data ownership, a question was put to Stacy from the audience, “what would you personally do with your data?” Stacy responded by saying, “every day I try to figure out why I did everything right and my son suffers and I got cancer. I mean, we'll never know the answers. Things just happen. You know it's genetics. But I think more importantly, what I did right, that I could help somebody else with. So everybody always asked me, how did you beat stage four cancer? And again, I don't know. My oncologist doesn't even know. would I would look at every single thing that I've done in my son's journey and in my journey and try to help somebody else. That would be it. That would be the number one thing that I would do.”

Take Charge Of Your Health. Don't Wait For It To Take Charge Of You. 

We concluded our conversation by asking Stacy to share a message for colorectal cancer awareness month. 

“Get screened. So my biggest thing with colorectal cancer and colon cancer, they're interchangeable, is to initiate a conversation with your healthcare professional about screening. In the US, the screening age was just lowered to 45 and that's due to the incidence in colorectal cancer. In young people age 20 to 49, it's way up. So if nothing else, have a conversation with your doctor about your options for screening. Don't be afraid. No shame, no stigma. Poop is beautiful. Our butts are beautiful. No part of your body is off-limits. Your poop and your bloodwork tell your whole life story. So please from a stage four survivor who never saw it coming, who was the healthiest person she knew, out running the day before her colonoscopy. Please initiate a conversation with your doctor about getting screened for colorectal cancer.”

On this year's World Cancer Day, which occurred on Friday, 4 February, the theme was the equity gap in cancer care.

“People who seek cancer care hit barriers at every turn. Income, education, geographical location and discrimination based on ethnicity, race, gender, sexual orientation, age, disability and lifestyle are just a few of the factors that can negatively affect care.”

According to the Centers for Disease Control and Prevention, health equity is achieved when every person has the opportunity to attain his or her full health potential and no one is disadvantaged from achieving this potential because of social position or other socially determined circumstances.

To gain a deeper understanding of how this equity gap affects racial minorities, Kimberly Richardson, a patient advocate,and cancer survivor, was our guest for the first LinkedIn Live broadcast of 2022.

Kimberly is the Founder of the Black Cancer Collaborative, a nonprofit organization that focuses on the capacity building of black cancer patients and the acknowledgment of these patients in the medical and science environment. 

Here's a recap of some of Kimberly's points made during the broadcast. This is just a small sample of the deep conversation we had with Kimberly, and we encourage you to watch her recording on our YouTube channel to learn more.

Information Is Power

When Kimberly was diagnosed with a rare form of ovarian cancer called Granulosa Cell Tumor in 2013, she explained how unsupported she felt by "the very people I thought were supposed to offer me care." This experience gave Kimberly the inspiration to begin her advocacy work. It was important to her to make sure that other people wouldn't have to go through the same experience of feeling unsupported and not understanding their diagnosis and treatment options. 

In 2020, Kimberly is diagnosed with a second type of cancer, this time triple-positive breast cancer. This is a very different situation than before. In the intervening years, she has done her research, and she has met “wonderful oncologists and great researchers with a great passion for the work they want to do in cancer research.” 

“I was able to go to them and say, these are my test results. What does this say, right? What are some of the next steps? What are some of the questions I need to be raising? And so I hate to use the word empowered because it sounds like somebody had to give you power in order for you to use it.”

Her oncologist told Kimberly she would have to undergo 33 consecutive radiation treatments, but after conducting research she found she could undergo accelerated partial breast radiation. However, the oncologist disagreed with this plan of treatment, so Kimberly turned to a radiation oncologist, who said, "I'm very familiar with that study.". And yes, you'll be able to do that.” 

“From thirty-three consecutive treatments to five over 10 days,” says Kimberly. “That is the ability to take information and make an intelligent decision, one that you would think you'd be able to make with your oncologist, someone who would tell you about all your treatment options. But when that doesn't happen, that's what my advocacy is about. It's about providing that information someplace else. That you can then bring those pieces of paper in and say this is a study. And if you're not being heard, then that raises a red flag with you that perhaps you're not dealing with an oncologist that is the most up to date.”

Choosing the Advocacy Path

Kimberly shared her passion for advocacy, encouraging others to get involved “once you're out of the fog of treatment…I like to support people that are coming into a survivorship plan and let them know that your voice can be heard and in very important ways.” 

Kimberly believes strongly that this goes beyond “just sharing our stories and what we're now calling our lived experience, but then applying it where policy can actually make a change.”

In a message to healthcare professionals, cancer researchers, and industry stakeholders, Kimberly says, patient stories, are “more than the warm-up.”  “We are asked to come on and share our cancer story in five minutes and then to get on with the business of the day when we are the business of the day. We’re the reason you are doing the job you are doing.” 

She believes that patients need to put a value on their stories. “The work of a patient advocate is to say that out loud, that my story matters. It's meaningful and it has a place at that table.”

Kimberly points out that “it's one thing to say, we have a seat and a voice, but it doesn't mean anything at the end of the day if it's just it's considered. But then you see your work, your ideas come to fruition through a company.”.

Recruiting racial and ethnic minorities to clinical trials

Despite efforts to increase diversity in clinical trials, racial/ethnic minority groups generally remain underrepresented, making it difficult for researchers to test the efficacy and safety of new interventions across a wide range of populations.

Kimberly says she is tired of the narrative that black patients mistrust the healthcare system and this is the reason they are not involved in clinical research. “It’s just simply not the case,” says Kimberly. The real reason is “because we simply have not been asked to participate, as well as Asians, as well as Native Americans, as well as Latinos. We have not been asked to participate.” 

To make real change, believes Kimberly, we have to involve everyone. “To move that dial on cancer research… if we really think we're going to find a cure, it's going to take all of us.  If you're not there, that's one unanswered question.”

Towards the end of the conversation, we asked Kimberly what the healthcare community can do in order to close the care gap.

“For oncologists, I ask you, I implore you, to be better at how you communicate with your patients. And for researchers, I ask you to see us as equal partners in this research that you bring a scientific skill and I bring a lived experience and they matter and those things together are going to help you with your research, design, and your protocols and ultimately with the results of your studies.”

 “And when we talk about closing the gap. Let's be authentic. And acknowledge that these gaps exist. And do more than just go, Oh my God, that's horrible. Yeah, let's start thinking about ways to fix what we know we can fix. It's possible to fix this.”

Here at merakoi, we are committed to bringing you stories from the edge of healthcare. Our mission is to share the voices you often don't hear in healthcare. It is more important than ever to bring a diversity of perspectives to the table.

We can only hope to transform healthcare in a way that is meaningful and impactful for all patients, regardless of their circumstances, by doing so.  If you are interested in hearing more stories from the edge, join our mailing list to learn about future events.

Anti-smoking campaigns over the past decades have focused on the link between tobacco and lung cancer. While these campaigns have contributed to decreasing the number of smokers and raising awareness about smoking-related health issues, they have also contributed to creating a distorted perception in the public’s mind that smoking is the sole cause of lung cancer. This has ultimately affected the public empathy shown to people living with lung cancer. 

Although the connection between smoking and lung cancer cannot be denied, did you know that as many as 20 percent of deaths caused by lung cancer occur in people who do not smoke? Other factors also cause lung cancer, including exposure to radon, air pollution, genetic mutations, carcinogens such as asbestos, and second-hand smoke. And yet, despite this, for many people with lung cancer, the very first question they are asked is “did you smoke?”   

Lung cancer is one of the most common forms of cancer, with more than 2,000,000 people diagnosed worldwide each year, and is the leading cause of cancer death globally. Unfortunately, it is also one of the most stigmatized of all cancers. Results of a study published in 2015 in the journal, Lung Cancer reported that lung cancer attracted higher stigma scores than breast and cervical cancer on all subscales. According to the American Lung Association, “this has kept lung cancer in the shadows.”

We know that stigma is associated with negative psychosocial and medical outcomes, including delayed diagnoses, poor quality of life,  disease-related distress, and poorer health outcomes in lung cancer patients.

This #LungCancerAwarenessMonth, let's change the conversation about the disease. Instead of asking a person with lung cancer "did you smoke?" with all its attendant blame and shame, offer words of support instead. Try asking the person how you can help them deal with a disease that no one deserves to face alone.

We asked the following questions of our experts:

• What do you think is missing in the breast cancer narrative?
• Why do you think it is important to co-create solutions with patients from the start? 
• How do you think your professional skills contribute to the co-creation process?

Many Shades Of Pink

While there is no denying that Breast Cancer Awareness Month (BCAM) has played a significant role over the past two decades in raising public awareness of breast cancer, there is nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.” 

Penny Rutterford stated that many in the community “are tired of the ‘pink-washing’ of our disease.” She also takes issue with the “fighter narrative [which] can make us feel blamed when our disease progresses.”  

Another element missing from the current BCAM narrative is the assumption that breast cancer is one disease. “When we get our own diagnosis it really can come as a shock that there are so many treatment and surgical choices,” she said. 

Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney, who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, also emphasised the fact that not all breast cancers will present in the same way.  “Invasive lobular breast cancer, the second most common type of breast cancer is not often spoken about and sometimes women are not aware of the signs. It doesn't always present as a lump, and is frequently overlooked on mammograms, particularly in women with dense breasts,” she told us. 

Rosine Mucklow spoke about the diversity of experience in our breast cancer stories. “Not one breast cancer narrative is alike- our stories are like individual pebbles on a beach,” she noted. “From a distance, they all seem similar, but from up close they reveal many different shapes, sizes and colours."

Facing Up To Cancer Recurrence

Casey Quinlan pointed out that the message of early detection, a cornerstone of BCAM, while important, fails to account for high recurrence rates. “More research into recurrence is deeply necessary,” she stressed. 

While we may not wish to think about the possibility of recurrence, it is a reality that is largely missing from the BCAM story, except for one day - 13 October - set aside to raise awareness of metastatic breast cancer (MBC). “One day,” pointed out MBC patient, Kristie Konsoer, “that is usually glossed over because it isn’t pink or happy is not enough. People need to know that MBC is the cancer that kills relentlessly. It is a tragic part of the narrative, but we can do so much more to bring it and research for it into the light.”

MBC patient Melissa Holzer agreed that “metastatic breast cancer gets lost in the sea of pink that is October”, calling it, “the not-so-pretty-in-pink stepsister of the ‘good kind of breast cancer’ that no one wants to acknowledge.”

Like Casey and Kristie, Melissa calls for “more focus on metastatic research to truly make a difference for the metastatic community.  Without a cure, all the early detection and awareness in the world is not saving lives.  We are the forgotten, the misunderstood and the betrayed and over 40,000 of us are dying each year as we hold hope for a cure.” 

The Importance of Shared Decision Making

“Breast cancer requires the patient to become fast-tracked in understanding treatment and surgery options,” explained Terri Coutee, a passionate advocate of shared-decision making in healthcare. “This is why patients and healthcare providers should be team members sitting at the table together to engage in discussion to decide what is best for the patient.”

Ensuring Diversity in Research 

In answering the question of diversity, Casey believes that “simply flattening the access curve would be outstanding - making sure that every person diagnosed with breast cancer, at any stage, has access to testing and treatment options that work best for that person.”

Megan-Claire Chase feels strongly that the pharmaceutical industry has been missing the mark when it comes to diversity and representation in clinical trials. “Pharma should first acknowledge it has been missing the mark and show determination to make sure diverse populations are always part of the conversation by including our voices during the beginning phases of the clinical trial process,” she stated. “Widen the criteria and revamp the language used in trial designs and other paperwork that is currently offensive and racist.” 

Megan-Claire also thinks that not enough is being done to reach Hispanic and Latino communities. “If everything is always written in English,” she pointed out, “pharma is missing a huge opportunity to connect with the Hispanic and Latin community so they can understand options and resources.”

Penny reminded us again that breast cancer is not just one disease. “Breast cancer is many different diseases and those of us who get diagnosed with it are just as diverse” she said. “When researching our disease or seeking help with treatment we need to see ourselves represented. From my experience the images and case studies I see and read don't really represent the population.”

While Penny recognises this is a challenge to address, it is nevertheless important to address it. “Seeking out patient voices and case studies from a range of backgrounds, ethnicities, genders, progression helps in some small way to address this”, she advised. “Patients have experience of finding support systems where they feel comfortable, are represented and which meet their personal circumstances - companies can learn from them.”

Not only is breast cancer more than one disease, but it is also not confined to women.  Men get breast cancer too, as male breast cancer advocate, Rod Ritchie pointed out.  “Unfortunately not enough people understand that breast cancer is a genderless disease. While the pink charities are good at raising funds for awareness and supporting women at the early stages, they are neglecting late-stage patients and men of all stages,” he said. “Pharma needs to step in here and spread the word about the diversity of the disease, including its types, sub-types, and ethnic differences. Every day, my skills as a patient advocate and social media influencer are directed to these ends.”

Co-Creating Solutions With Patients

“True co-creation lets everybody in a room become creative about a subject they feel close to." - Rosine Mucklow

How do you know what patients need unless you go directly to the source themselves? How can you know the best way to communicate with them?

“Until we are patients ourselves it's hard to appreciate what language to use around breast cancer,” remarked Penny. “How does it really feel to find yourself as a breast cancer patient? When companies co-create with patients right from the start it is easier to hit the right and impactful note with communications. Because as patients we know what does and doesn't work for us.”

This approach is the best way to start creating tailored patient-centric solutions, believes Allie Moon. “By co-creating with and integrating the patient voice from the start - listening to the needs, experiences and concerns of those who truly know what it’s like to live with the disease - will ensure tailored patient-centric solutions,” she emphasised. “This will ultimately improve the quality of patient experiences, care and outcomes.”

Jennifer Douglas noted that “patients are at the heart of health solutions.”  “Pharmaceutical companies that ask patients to participate and offer their perspectives before, during, and after the creation can better tune their projects to meet the needs of the patients they are serving,” she said. “By engaging with patients from the beginning, companies can better understand what is working and what could be improved earlier in the product development cycle.”

When it comes to clinical studies, Casey is adamant that patient involvement “needs to start from the scientific question that kicks off clinical research, all the way to communicating the results of that research.” Quoting “Nothing about me without me”, Casey insisted that patients must be included “from beginning to end in all medical science.”

Both Casey and Penny spoke to us about the professional skills they brought to the co-creation process, beyond their patient experience.  Casey brings “more than two decades of experience in gathering news stories to my work now in driving toward better health and care for all humans.” She believes that “getting all the stories - from people-called -patients, doctors and nurses, and clinical researchers - will help create better questions for research, and better treatment for patients who need it.” 

For Penny, it is her communications background which she is keen to apply to co-creating campaigns and communications that really resonate with patients.  “I often work and volunteer as a patient advisor with breast cancer charities and organisations to devise impactful campaigns,” she told us, “be they digital, print or broadcast. This may be as a panel member, collecting patient voices, devising design briefs, or writing clear and understandable copy.”

At merakoi, the patient as expert is at the core of the work we do. We know that patients are more than their disease. They are professionals who bring a wealth of experience to the work they do to improve the lives of those in their communities. We are so grateful to Allie, Siobhan, Marissa, Casey, Penny, Megan-Claire, Rod, Rosine, Kristie, Jennifer and Terri for taking the time to share their thoughts with us this Breast Cancer Awareness Month.