Sharing experiences to level the healthcare playing field

Amanda Barrell speaks to Alfred Samuels on his experience of prostate cancer and diversifying clinical trials to include the Black, Asian and minority ethnic (BAME) community.

Alfred Samuels’ stage 4 metastatic prostate cancer brought his 30-year career, which had seen him travel the world with the likes of Beyoncé, Oasis, and Bob Dylan, to a shuddering halt.

Now, through his books and advocacy work, he is determined to help others prepare themselves for the “horrendous” cancer journey and help level the healthcare playing field for the BAME community.

In 2011, Alfred was a fit and healthy 54-year-old providing security for music’s A-listers on global tours. But then he started experiencing an excruciating pain which radiated from his lower back and into his leg.

“It’s really important for men, their partners and families to understand that there is much more to this disease than you think”

At A&E, he was told it was “probably sciatica”, but was advised to ask his GP to refer him for an MRI scan just in case.

“They messed me around for three months before agreeing to a scan. Then, two weeks after the MRI, the diagnosis came in. It was stage 4 metastatic prostate cancer and it had spread to six locations in my body,” said Alfred.

“I went for some tests and the prognosis came back – I was given six months.”

While he was fortunate enough to secure a place on the STAMPEDE clinical trial, during which he received abiraterone and hormone injections, the side effects were “not pleasant”.

“I was hospitalised on a couple of occasions because the pain was horrendous, and they hadn’t got the pain relief medications sorted out properly. I collapsed due to compression of the lower back. I had brain fog and fatigue. I went from someone who was able to run and sprint quite easily to being like a 90-year-old man. It was not a pleasant journey.

“It was untimely, unwanted, and as far as I’m concerned, undeserved,” he said. “My career was over, you’ve got all these mental issues, and then there’s the financial toxicity of it all.”

At the time of presentation, Alfred’s prostate-specific antigen (PSA) was more than 500 ng/ml, compared to the “normal” level for his age at the time, between 2 ng/ml and 4 ng/ml.

However, within months his PSA had dropped to less than 0.01 ng/ml, so Alfred stuck with the punishing protocol.

“One year became two years, two years became three years, and it’s probably then that I started to believe in myself, believe that I could beat it,” said Alfred.

Publishing the journey

Since then, he has published two books based on his experiences and the diaries he has kept of his journey. Invincibility in the Face of Prostate Cancer: Coming Out the Other Side charts his time in the clinical trial, and Motivated to Inspire focuses on the post-treatment period.

“I think it’s really important for men, their partners and families to understand that there is much more to this disease than you think.  You really have to work as a team to get through it,” said Alfred, adding that his wife, Grace, had been invaluable support throughout his journey.

“Interacting with the medical fraternity needs to be explained to people so they get a better understanding of what they’re going to go through. It’s a journey full of pitfalls and pain, and you’ve got to be able to condition yourself for that.”

Focus on inclusivity

Alfred is an ambassador for Cancer Research UK, which funded the STAMPEDE trial, and works with groups including The Urology Foundation and Orchid. He also sits on a patient consultation panel for pharmaceutical company Parexel.

Much of the work he does centres around raising awareness of the patient experience, and the issues of diversity and inclusion are always top of his mind.

“Black people are not getting the best deal when it comes to healthcare, and where prostate cancer is concerned, black men are disproportionately affected,” said Alfred, explaining that Caucasian males had a one in eight chance of developing the condition, while the figure is one in four among black men.

A big part of the problem, he went on, was a lack of BAME representation in clinical trials, and he urged anyone from underserved communities to take part in research if they could.

“There are medications that are just not being tested on people from the BAME community. We will react differently to Caucasian people, so without more people from BAME backgrounds getting involved, we can never be sure that the information we are getting is correct,” he said.

Asked how the industry could be more inclusive, he said it was about trust and understanding.

“If you don’t take the patient’s voice into consideration, you have no understanding of what’s going on for them out there and you end up in a sticky situation.

“I think pharmaceutical companies are cottoning on to that now, but there’s still a lot of mistrust. It is about building relationships and getting to know the communities you are working with.

“Are you speaking in a language that they understand? Are the concepts broken down so that they are digestible?

“It’s not rocket science,” said Alfred, adding that the industry is now starting to understand the importance of such issues, and put plans in place to address them.


Patient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 2 million patients and caregivers worldwide.

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Pharma needs to adapt its communications or be left behind

As the world continues to grapple with the ongoing impact of coronavirus, the healthcare industry has taken centre-stage, working tirelessly and more collaboratively than ever to tackle challenges thrown up by the pandemic.

Amid the turmoil and the race to not only find a vaccine but also help to care for those who are battling the long-term effects of COVID-19, healthcare organisations need to sharpen their communication skills.

Against a backdrop of multiple challenges, now may not feel like the right time to overhaul communication strategies, but in the race for relevance the choice is clear: adapt now or risk being left behind.

By adopting a design-led, solutions-based approach to communications, companies can help healthcare professionals (HCPs) to better meet the needs of their patients through their comms, taking a scientific approach to creating clear, rational processes built on discovery, definition, development, and delivery in every aspect of healthcare.

Good, empathetic design allows the science to shine. Scientists can use this as a basis for clearer communications, helping to share their expertise with patients and healthcare companies effectively. Creating a more informed patient can improve outcomes and ultimately, quality of life.

This goes hand in hand with a change already taking place – one that has been building for some time but has been accelerated in present day conditions – and that is for pharma medical affairs teams to become actively involved in their companies’ communications strategy.

When this starts earlier in the development process, it proves to be hugely beneficial in demonstrating the tangible value to the patient of the drug or treatment, the support structure surrounding it. Healthcare companies can do well to adopt the best practices of other industries’ marketing playbooks; those that have long considered the end user – the shopper, the enthusiast, the audience – at the outset of any product or service development.

“Better communication rooted in a design mindset does not mean dumbing down the scientific endeavour, rather it makes it possible to get the very best out of the science and for it to land in the most effective way”

In this merging of med affairs and communications, healthcare companies come close to emulating the tools used by marketing professions in other industries – the focus on the end user. From a shopper, to an online audience, marketing best practice gives significant consideration to the ultimate user throughout the development of any offering or communications.

Better communication rooted in a design mindset does not mean dumbing down the scientific endeavour, rather it makes it possible to get the very best out of the science and for it to land in the most effective way. By forming a thorough and insightful communications strategy based on patient needs, any advancements in efficacy can be matched by improved compliance and concordance.

Healthcare companies that take this approach can improve their processes before commercialisation by breaking down internal silos. This makes a thorough and insightful communications strategy based on patient need more likely. And subsequently, this can help improve efficacy, compliance and concordance with treatments.

Patient focus

The shift in the way companies bring their products to market needs to reflect how patients are taking a greater role in their healthcare decisions as they seek medical information outside their doctors’ surgeries. This means that presenting information in a form that patients can easily access and understand will become more prevalent.

It takes imagination to engage an audience, knowing how to appeal to people’s instincts, to meet their needs and address behaviours – this is a science in itself. Through design, better patient experiences and more relevant and compelling content. There are universal benefits to creating more imaginative and relevant content. Everyone gains – HCPs can do their job better, patient compliance improves, and healthcare companies achieve improved business results.

The role of medical affairs teams is vital in this process. McKinsey highlighted the new media opportunities when medical affairs teams work with all healthcare stakeholders to understand patients’ needs. These range from being an advocate and voice for patients, to embracing new technologies, ensuring health outcomes are the key focus for companies, and engaging with a range of stakeholders in the healthcare process. For HCPs looking to improve compliance, this helps to reassure them that drug manufacturers have incorporated patient insight into development.

With a blended approach, combining the intelligence and skillsets within a pharma company with the creativity and insight from an agency, the work of the R&D scientist, medical affairs, medical sales liaisons (MSLs), marketing and branding teams can come together.

Medical affairs teams have always been involved in patient engagement activities, but the fast-evolving environment and increased expectations of patients mean that their role has never been so important.

But it can take time to instigate these practices and truly embed them within a company. However, Covid-19 has offered an opportunity – healthcare companies have seen their traditional ways of communicating with HCPs curtailed. HCPs have had to find their information given sales reps and MSLs are no longer on the road.

Embracing digital

Aside from better meeting patients’ needs, this change has been prompted by the expansion of digital environments. Digital in the broadest sense – be it AI, electronic patient records or access to real-time health tracking data – has allowed clinicians’ work to be streamlined, for systems to be optimised, human error to be reduced and costs to be lowered, all helping improve patient outcomes through better concordance and experiences.

This digital ecosystem can do so much to help HCPs – and subsequently patients – but it necessitates a clear digital strategy, so it aids the process, rather than creates information rabbit holes and disconnected systems.

This again calls for imaginative design practice. Designing intuitive, accessible, relevant and clear digital environments for the HCPs is one-way communications specialists can bring the world of science to life, through better design. By working with MSLs, medical affairs and science-based teams earlier in the lifecycle of the pharmaceutical and medical device companies, we can help join the dots.

Understanding the patient

Exactly how this manifests itself depends on therapy and treatment type. We usually start a project by adopting a broader perspective – to understand fully the environment we’re working in. Building patient dialogue invariably starts by researching how those patients feel about their illness or condition: gaining an understanding and insight into the challenges they face is the first step to seeing the patient, rather than the condition.

Truly understanding how patients talk about living with a condition may be best done through a social listening exercise or an ethnographic study. This helps build the picture of the here and now, the springboard from which the company can start preparing the market.

This should then be paired with deep understanding of the current environment for the disease area. Is it underdiagnosed or badly treated, does it fall between disciplines clinically, are there psychological as well as physiological impact? These factors determine the impact of a new drug coming to market, which HCPs to educate and how best to reach them.

HCP surveys and interviews might help identify the knowledge gap and collate findings to derive insights – there may be a lack of education around the condition, it may be misunderstood even though it’s a recognised condition, there may not be a clear protocol or pathway. The insight can, for example, be used to help build an educational programme that works in part as a pre-commercialisation process; develop a disease awareness campaign to highlight the real issues of living with a chronic condition.

Tackling issues around unmet need head on at the beginning of the process helps to build a strategy that puts the patient and HCP perspective at the heart of the communication and enables identification of how best to deliver it to make a difference – an app, video snippets, first-person perspectives, further evidence, different modes of communicating the science.

This comes from thinking about the HCPs’ information journey, what they need to know and when, accessing clinical information, being able to drill down in the areas where more explanation or background evidence is required, in a time-efficient and trusted way.

McKinsey identified three major changes to the healthcare landscape:

  • How value is defined – it will be much broader and will expand as healthcare stakeholders demand to see how value can increase. There will be an increased focus on evidence and proving product value.
  • Interactions between pharmaceutical companies and various medical stakeholders will continue to evolve as new decision-makers emerge and there is greater public scrutiny of these relationships. The role of patients will fundamentally change as consumerism in healthcare increases.
  • The proliferation of data and demands for transparency will accelerate. The number and types of users of medical data and information will continue to expand rapidly.

By embracing these changes, and creating innovative communication platforms, there is huge scope to add value for healthcare companies as they offer contextualised information to HCPs across all areas of medicine.

With empathetic design we can channel scientific endeavour, providing a springboard to communicate the benefits and treatments of medicines to all healthcare stakeholders, for the improved health of everyone.

About the author

Clare BatesClare Bates is content director and a partner at Page & Page and Partners. She is a trained journalist with experience of developing content for B2B and B2C audiences.

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Ring 20: Could the rare disease get left behind by next-generation gene sequencing?

Ring Chromosome 20 Syndrome, or (R)20, is an ultra-rare form of epilepsy with a devastating impact – yet despite huge leaps forward in gene sequencing in recent years, diagnoses are going down instead of up. We spoke to Allison Watson, co-founder of Ring 20 Research and Support, about raising awareness, building the evidence base, and the importance of helping people through a pandemic despite limited funding.

Allison’s son David was just six when he started displaying the symptoms of (R)20, a genetic condition that can cause multiple, uncontrollable seizures, declines in cognition and mobility, and terrifying hallucinations.

As with many cases of (R)20, often called ring 20, David’s seizures appeared to come out of the blue.

“Unlike with many similar conditions, a child will develop normally until the seizures start to kick in,” said Allison.

“The child will often go backwards and lose abilities that they previously had. They may lose the ability to process properly or to speak. They might lose mobility and need a wheelchair. Others need help feeding.”

Ring 20 is a chromosome anomaly. Instead of being a pair that looks like two sticks, one or both arms of the 20th chromosome are joined at the ends, making them look like a ring under the microscope.

“A lack of awareness of the condition, which is known to affect at least 150 people worldwide, contributes to a diagnostic delay, said Allison, adding that children often experienced nocturnal, hallucinogenic seizures that healthcare professionals were simply not familiar with.”

The resulting seizures vary – in length, type, and severity – from person to person, but even mild forms of the disease have a huge impact on quality of life.

Typically, people have impaired awareness seizures that can last anywhere between 20 and 40 minutes. For some, this can go on for days, leaving them in hospital or even in an induced coma.

“My son, who is now 23, will have four to six non-convulsive events every day – that’s just normal.

“It’s like the lights are on but no one is home, so you have to be really careful. They could be doing something like cooking or having a bath. It really impedes their independence,” said Allison.

Non-existent treatments and diagnostic challenges

Despite the huge unmet need, ring 20 diagnosis is slow, and treatments are practically non-existent.

“Ring 20 doesn’t respond to any treatments: nothing seems to work. There are no clinical practice guidelines, meaning doctors treat on a case-by-case basis. They are effectively working blind,” said Allison, who co-founded the charity in 2014.

“Families just have to learn to live with these regular seizures and the associated comorbidities.”

A lack of awareness of the condition, which is known to affect at least 150 people worldwide, contributes to a diagnostic delay, said Allison, adding that children often experienced nocturnal, hallucinogenic seizures that healthcare professionals were simply not familiar with.

“A child may appear to awake from sleep. They may shake or shout out and can have a stiffness in their bodies or their arms. They may have a frightened expression on their face, and some describe horrific events. They see sharks swimming around their head, or fire in the room, or big black holes jumping up in front of them.

“This is often misdiagnosed and disregarded as night terrors, so this obviously denies diagnosis.”

Another, apparently contradictory, point is that the number of ring 20 diagnoses have actually declined with advances in genome sequencing, which cannot detect the presence of ring chromosomes.

Allison explained: “Human genome sequencing, exome sequencing, and even CGH array all look for additions, duplications, or something missing from the DNA. But in the majority of ring 20 cases, there is no misspelling in the chromosome.

“The way to diagnose it is to go back to the old-fashioned carrier type, to physically look at the cells under a microscope to see the rings.”

Additionally, doctors looking for a chromosome abnormality would typically send 30 cells for analysis. But the misshaped chromosomes that characterise ring 20 are only present in a certain proportion of the person’s cells.

Said Allison: “They need to be sending about 100 cells for analysis, otherwise they could miss the ring.

“We suspect that this particular disease is very underdiagnosed in people with genetic epilepsies or an undiagnosed cause for epilepsy, and we also suspect that people that do have a diagnosis may be potentially misdiagnosed.”

Raising awareness, offering support

That’s why Allison is so keen to build the evidence base and raise awareness of the condition.

As co-chair for EpiCARE, the European Reference Network for rare and complex epilepsies, she is working on projects ranging from a patient pathway map to e-learning modules for healthcare professionals.

And members of Ring 20 Research and Support have raised enough money to embark on a two-year natural history and biomarker study, as well as establish a patient registry.

“This is a fundamental building block to future research opportunities so we’re very proud of our families for getting us to this point,” she said, adding that the registry “would have been up and running by now if it wasn’t for COVID”.

The pandemic caused both a surge in demand and a drop-in financial support – a problem that has been seen across the patient support sector.

But with it being more important than ever to ensure people with ring 20 and their families get the support they need, so COVID or no-COVID, Allison and her team have no intention of scaling back their plans. In fact, they have even extended their offering to include online peer networking.

“Because our families are so disparately located, some may never get to meet another family with ring 20 at all. So, we have been having fortnightly Zoom calls. We’re connecting families from the US and Australia, the UK and Europe, even South Africa,” said Allison.

“We’re based in the UK, but we support families worldwide. We’re the only organization doing this,” said Allison.

 


Cambridge Rare Disease Network Exploring Rare Diseases is produced in partnership with Cambridge Rare Disease Network (CRDN). CRDN is building a vibrant network of patients and stakeholders to share knowledge and foster innovation that leads to better diagnosis, treatment and support for those living with a rare disease

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Toxic positivity and grief: The reality of living through cancer

Cancer doesn’t end when treatment stops – it’s a lifelong journey and people need support throughout, says patient advocate Megan-Claire Chase.

No one gets through cancer unscathed. People are usually left with a mixture of treatment aftereffects, toxic positivity, and lingering anger to deal with.

Megan-Claire Chase, a fierce patient advocate who has been blogging about her experiences since she was diagnosed with breast cancer in 2015, said the disease never went away.

“Sometimes, people feel that once you finish your treatment, you are done, and you should stop talking about it. But really, it has only just begun. It is a lifelong journey.

“We’re going to need to have scans forever and we’ve been traumatised by the whole experience, so it’s hurtful when your family members and your friends think you should just move past it.”

Megan-Claire underwent 16 rounds of chemotherapy, nine operations, and 33 radiation treatments after developing invasive lobular breast cancer in her  30s.

As a result of the treatment, she is infertile, has chemo-induced fibromyalgia and neuropathy in her hands and feet. She goes to the cancer center for a diagnostic mammogram and rotates between getting an MRI and ultrasound every six months for 10 years.

“You know that people have good intentions and they are coming from a good place, but when your family and friends just want to see you smiling all the time, it can feel like you’re putting on an act”

Quality of life after cancer

There are a lot of quality of life issues, many of which were not understood outside of the cancer community, says Megan-Claire.

She says: “Sometimes I have to walk with a cane. Because of the neuropathy on my feet, I can’t walk very long distances because the numbness goes up my leg and I fall over and hurt myself.

“That’s what I want people to understand. Some people are on active treatment forever. For others, that treatment has a stopping point, but even then, there are all these other issues that can stem from the poison that goes into your body.”

News stories about cancer survivors going on to achieve great feats of endurance do nothing to help the public perception of what it means to live with the long-term effects of the disease and its treatments.

“Some people are able to climb mountains and do walks and all of that physical stuff. But for others that ability was taken away and it feels like yet another loss,” says Megan-Claire:

“We’re constantly grieving – grieving the loss of the body parts that are missing, the physical abilities we had, and, for many of us, grieving the jobs we used to have before we had to stop working.

“We also have to grieve the friends we have made and lost along the way. We’re constantly reminded of our mortality and have to live with the fear that it could come back at any time.”

Releasing the negative

Through her blog, Life on the Cancer Train, and her advocacy work, Megan-Claire meets many young people in a similar position to her. She believes it helps to give them the space to own their feelings and share their experiences with others who truly understand the nuances of life after cancer.

“When I write, I write what is on my mind, but I always find that resonates with people. A lot of people are hurting, and I think it helps that I post about the elephants in the room: the mental health issues, the anger, the post-traumatic stress disorder,” says Megan-Claire. “People need a place to release all that.”

‘Toxic positivity’ is another issue people who have been through cancer treatment commonly face and dealing with it head on can be extremely difficult, Megan-Claire explains.

“It’s impossible to be this tower of strength all the time. A lot of us get annoyed when we are told: ‘Oh, you’re so brave’, or ‘I don’t know how you do it’. When that happens, all I’m thinking is ‘Do I want to live or do I want to die. It’s not a fair choice.’

“You know that people have good intentions and they are coming from a good place, but when your family and friends just want to see you smiling all the time, it can feel like you’re putting on an act.”

Peer support

What people need, she went on, was a place where they could “take off the mask and just be vulnerable”. And that’s where peer support comes in.

“Cancer support groups are a safe place where people can meet and talk about their experiences with no judgement.“” says Megan-Claire, who belongs to several young adult cancer groups online.

“My advice to people is always: if you’re angry, be angry. If you’re sad, be sad. Just don’t wallow in it forever. We need to feel these emotions so we can move through them and then do what it is we need to do to move forward with our lives.”

To read Megan-Claire’s blog, click here. See our last interview with Megan-Claire here.


inspirePatient Insights is a monthly series that appears in partnership with Inspire, a company with an online support community of more than 1.5 million patients and caregivers worldwide.

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