In search of the human narrative in oncology
Oncology Matters reflects the findings from 60 interviews conducted in USA and EU with key opinion leaders and patients (across a range of cancer types)
Advancements in oncology treatments over the past decade have delivered new hope for many patients. Targeted therapies have become a growing part of many cancer treatment regimens. Continual development in this area, such as immunotherapies, bring us closer to truly personalized cancer treatments of the future. Alongside innovation in drug discovery, a parallel revolution in patient empowerment is rapidly gathering pace. A growing number of patients refuse to passively follow treatment plans laid out by their doctors; they are more informed and want to play an active role in treatment decisions.
The pharmaceutical industry is responding by moving towards a patient centric model. They are moving away from providing cancer treatments to become solution providers. The goal is to enhance the patient and caregiver experience before, during and after treatment initiation. Oncology Matters explores the changing dynamics between patients, cancer specialists, the pharmaceutical industry and oncology brands. It identifies a series of human-centric themes that add to the growing knowledge and understanding of the clinical side of the disease. It identifies the human narrative which adds opportunities for oncology brands to optimize the holistic patient experience at every stage of the journey.
Highlighting what matters to patients, caregivers and healthcare professionals beyond essential clinical needs
The era of the empowered patient Knowledge is power, but power must be positively channelled to deliver healthy outcomes
Harnessing the power of ‘virtual patient influencers’ to engender positive patient behaviors
They say that knowledge is power and the internet provides patients with unlimited access to information on cancer. Information that in the past was only available to healthcare professionals is now free flowing and within everyone’s reach. Informed patients are increasingly becoming strong self-advocates who want a greater say in their treatment. It is now possible for patients to become mini experts on everything from diagnosis, prognosis and latest breakthroughs in treatment.
Digital is also driving patient-topatient connectivity. Social media facilitates an open and two way dialogue whereby patients and caregivers can share treatment experiences and advice. While knowledge may be power, as Einstein once said, “a little knowledge can (also) be dangerous”. Growing patient empowerment can sometimes come at a cost. A number of studies have shown that increasing confidence can lead patients to make reckless decisions, such as not taking their cancer treatments properly. Such behavior is often fuelled by reinforcement from ‘friends’ in their social network.
Cancer therapy has traditionally been dominated by IV treatments, however oral agents are increasingly used, and this means non adherence is becoming a growing concern. Our research highlighted examples of patients who follow the advice of other patients about the risk of recurrence (e.g. breast cancer patients who have had a lumpectomy). Such patients equipped with little knowledge have taken the decision to discontinue long term cancer treatments.
How do patients use the information they find?
Likely they will discuss it with their doctor.
Felt more in control and with a better outlook.
Felt it gave them more confidence.
Felt it expanded their treatment options.
At PatientPower.com patients and caregivers connect with a community of medical experts and patient advocates as a resource for cancer information and advice. From cutting-edge research and treatment news, to coping with cancer in everyday life, resources such as PatientPower empower patients to take a lead in decisions about their care.
Million of hits on Google*
Cancer treatments Cancer cure
Cancer patient association
*At the time of going to press
Changing doctor mindset From “treating a disease” to “treating a patient” Oncology developed as a highly academic speciality, with a strong interventionist ethos. Training prepares cancer specialists for complex, analytical treatment decisions, based on balancing risk, best evidence, cost and benefits. The feeling that they must ‘act’ prevails and cancer specialists want to use all possible treatment options no matter how small the potential benefit. This explains why military or aggressive language
is still commonly used by cancer specialists who describe ‘weapons’, ‘survival’ and ‘defeat’ — it is the cancer specialist versus the disease, and patients can sometimes feel like a third party. This can create a disconnect between cancer specialists and patients. A new oncology narrative that better connects with the emotions of patients and caregivers is required.
A move away from a disease centric model, putting patient needs at the heart of decision making
PAST Cancer specialist Academic Orientation
Oncology brands Efficacy and survival focus
In future oncology brands will become the connective tissue joining the dots between cancer specialists, patients and the disease throughout the treatment journey
FUTURE Cancer specialist
In tune with patient clinical and emotional needs
PAT I E N T
Oncology brands Complete care package, balancing efficacy, survival, quality of life and support services
A new oncology lexicon From patient to person-based narrative
Personalized care packages to treat mind and body delivered via support services to patients Cancer is not a single disease – the way it presents, manifests and develops is unique. Likewise, no two patients experience cancer in the same way. Personalized medicine has made it possible to match patients with the best treatment. However, demand is now growing for personalized care packages which include services tailored to the needs of individuals. Patients and doctors have become increasingly tuned into the need for holistic care to address the physical and emotional affects of cancer. Having been diagnosed with cancer, patients typically experience bouts of depression which could be avoided with psychological support from diagnosis. The experience of care and emotional support matters as much to most patients as clinical effectiveness and safety. It has also been linked to improved health outcomes.
“Hearing the words breast cancer made me think my life was over. I couldn’t even take in what the oncologist was telling me….my mind was working overtime and it wasn’t pleasant…over the next few months I became quite depressed, not wanting to leave the house or even get out of bed…this carried on until I sought help myself…I started to get counselling and the negativity stated to lift…. What is annoying is that I had to go through this and find support myself – why couldn’t my oncologist have looked out for me?’’
Joan, 64 year old woman diagnosed with Stage IIb breast cancer
At the Penny Brohn Cancer Institute in Bristol (UK) the mission is to treat the whole person. They recognize the importance of support for their patients’ physical, mental and emotional health. It is a place where therapists show as much interest in people’s heads and hearts as in their livers and lymph glands. They empower patients to make lifestyle changes and practice self healing. They have evidence which links their methods with better health outcomes than clinical care alone.
End points that matter to patients
Demand for better quality of life data Patients and doctors are beginning to challenge the current clinical trial endpoints that focus only on Overall Survival (OS) and Progression Free Survival (PFS) markers. There is demand for drug makers to include “patient experience” data, impact on quality of life, and symptom reduction as indicators of success and drug approval. The FDA has made considerable progress in urging drug makers to include the patient perspective in drug development. The FDA has issued substantial guidance on using patient-reported outcomes (PROs) in trials, and partnered with the pharmaceutical industry to form the PRO Consortium, responsible for generating valid symptommeasurement tools. Yet, cancer-drug labels continue to stand in stark contrast to other types of drug labels, with only about 25% listing their effects on patients’ symptoms and functions. In this day and age, with more cancer patients living longer, patients and doctors are still having to choose among agents with varying efficacy–toxicity balances.
“When I sit with patients to discuss starting a new chemotherapy regimen, their first questions are often ‘How will it make me feel?’ and ‘How did patients like me feel with this treatment?’ Regrettably, this information is generally missing from U.S. drug labels and from published reports of clinical trials — the two information sources most commonly available to people trying to understand the clinical effects of cancer drugs”.
Dr. Ethan Basch, renowned KOL oncologist, in his recent article in New England Journal of Medicine
Better quality of life endpoints are required to help the pharma industry deliver on the promise of patient centricity
In 2011, 15 hematologyâ€“oncology drugs were approved by the FDA. For only one of these, ruxolitinib (Jakavi) for the management of myelofibrosis, symptom information was included in the label. Indeed, ruxolitinib was the first cancer drug in a decade that included symptom information in its drug label. Early in the development of ruxolitinib (Jakavi) there was a commitment to include symptoms that were viewed as important to patients as key endpoints in clinical trials. Questions were loaded into a handheld device that patients used to report their own responses daily, with near perfect levels of compliance â€” despite their debilitating symptoms.
r u x ol i t i n i b ( J a k a v i )
From cure to care I am cured from cancer, now what?
Pin-pointing every ‘moment that matters’ in a patient’s journey – including their needs once the ‘clinical’ journey is complete Improvements in prevention, diagnosis and treatment mean that certain cancers are beginning to act more like chronic diseases. Cancer may come back several times, with intermittent periods of control or remission. Long-term care needs have become a real consideration for patients with certain cancers. Drugs such as ibrutinib (Imbruvica) and idelalisib are now extending the lives of patients with Chronic Lymphocytic Lymphoma. Whilst not cured, their disease is more stabilized.
It is great news that patients are surviving longer, but the reality is that they also have to live with the ongoing emotional and physical impact of cancer. Patients don’t just want to live, they want to live well. Chronic disease management therefore necessitates a different, more collaborative ongoing relationship between patients and healthcare professionals. Patients want greater independence, emotional care and support for the consequences of treatment.
5 Year+ Survival Rates (USA) Source: National Cancer Institute
US doctors are proposing that the word “cancer” is no longer used to describe slow
growing tumours which may never pose any serious threat. Not only would a renaming of
unthreatening cancers be less frightening for patients, it may also sway doctors away from using unnecessarily aggressive treatments
women diagnosed with breast cancer
Bringing the art of brand-building to the new world of oncology
Helping to create the human narrative for your oncology brand Oncology brands, which focus on uncovering moments of truth before, during and after treatment initiation, are evolving from providing clinical benefits to providing solutions and win in the market.
PatientPulse is our framework which explores what patients, caregivers and healthcare professionals ‘Feel’, ‘Think’ and ‘Do’ at every stage of their journey. It reveals human insights and unmet needs which can be leveraged by oncology brands which seek to deliver a more holistic patient experience.
Before treatment initiation Perceptions about cancer, needs and treatments are formed and explored. Patients proactively build knowledge by searching for information. Having been diagnosed with breast cancer, Ann actively sought information on what type of treatment she might receive. By searching the internet for information on stage I breast cancer she was able to identify her likely treatment options. She also sought advice from family and friends and their input on the best treatment approach. Armed with this information when consulting the radiotherapist, Ann agreed that treatment with radiotherapy followed by a 5 year course of an aromatase inhibitor would be sufficient. A medical oncologist subsequently recommended a more aggressive approach which included a course of IV chemotherapy. Ann was against such an aggressive treatment which she knew would result in hair loss and other negative effects. Drawing upon her knowledge resources Ann was able to challenge the medical oncologist’s recommendation. The medical oncologist empowered Ann to decide the best treatment and with his support she choose the less aggressive approach.
Ann, 77 year old woman diagnosed with Stage I breast cancer
During treatment initiation During treatment initiation it is about optimizing the patient-doctor interaction so that the right treatment is initiated. It succeeds when doctors (and other HCPs) ask the right questions to enable patients to express their clinical needs and emotional priorities. It creates a situation where patients buy into their cancer treatment, know what to expect and feel well equipped to take the medication. “My hematologist was absolutely amazing….he spoke to me as a person and not a number…in fact he started to get quite emotional himself which really helped me. I could see that he was really looking out for me and trying to find the best solution. He explained what different treatments he would give me and also what things I would have to give up. Knowing that he had been so thorough about the benefits and drawbacks I could make a really informed choice, which I did.’’
Sue, 54 year old woman diagnosed with indolent Non-Hodgkin’s Lymphoma
After treatment initiation Patient satisfaction depends on how the holistic treatment experience matches up to expectations established earlier in the journey. The experience goes beyond the treatment to include support services that help patients stay on treatment and get the results they need. “Having been diagnosed with terminal cancer I can honestly say that I wouldn’t be here today without such a caring team around me, which includes doctors, nurses and my family. All have been so supportive. After I had my initial chemotherapy, I started to become really ill. However, the side effects I experienced were exactly what I was told may happen and that did help me a lot. My nurse was especially great at helping me. She phoned me at home to follow up on my chemo and talked me through what I needed to do to try and relieve the symptoms. That saved me having to come in and make the long journey to the hospital. When I do come to receive my chemo the other nurses take so much time with me to chat about how I’m doing and what they can do to help. Having cancer is one thing, but dealing with the treatments is another thing altogether. They are true angels.’’
Jim, 72 year old man with advanced prostate cancer
What matters to brands that seek to bring the human narrative to oncology? •
Oncology brands will increasingly adopt a patient-centric approach by delivering against both emotional and clinical needs.
Drug makers will demonstrate that a more holistic approach, which balances clinical endpoints with patient needs, will deliver better health outcomes.
In an era of personal choice, customization and differentiation will be imperatives, necessitating better patient communication to ensure they ‘opt-in’ to your brand.
Digital offers a media for marketers to harness the power of ‘virtual patient influencers’, driving peer-to-peer advocacy.
A new oncology narrative that reflects the emotional needs of patients will help brands better connect with end-users.
In future successful brands will become the connective tissue which join the dots between patients, caregivers, healthcare professionals and the disease.
Brands will seek to enhance the patient experience before, during and after treatment initiation.
Hall & Partners combines insights about people with an expertise in oncology to build and maintain brand relationships that matter to patients and healthcare professionals.
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