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What Makes a Patient Tick?
Celgene is probing deep into the patient psyche to capture the moments that matter. Could this set a new gold standard?
For us, it’s about bringing the patient population into sharp focus. Patient-centricity is about diving deep into pools of data to discover a richly diverse portrait of the patient, about getting ever closer to a true understanding of their individual hearts and minds, thoughts and desires, rational and irrational motivations.
Acknowledgment is only the first step, however, and the challenges of turning observation into insight, and insight into actionable steps, hammer home the sheer enormity of the task at hand.
Celgene in France is one company meeting those challenges head on.
While advocating for patient engagement and input at the earliest point possible, Jessica Leygues, Head of Patient Associations and Institutional Patient Programs at Celgene, explains that it is not just about incorporating these insights into product development and market access.
“Earlier means a lot earlier – not only for development but in the way that we want to support patients in their day to day lives. Engaging with patient organizations is not difficult – but helping their voices be heard by institutions and payers, that is what counts.”
Celgene are blazing a trail through the Gallic health service when it comes to patient engagement. For example, the organization is about to launch a personalized patient support program (PSP) in multiple myeloma, HéMaVie, co-created with the French Association for Multiple Myeloma Patients. Only by speaking directly to patients about their needs and expectations can a PSP meet them, she says.
“We wanted to do something quite different. This is the first time in France that a pharma company has co-led a support program with a patient organization, and we are very certain this initiative will be of significant benefit for patients but also for institutions. We want to show that with this kind of mutual approach we can avoid rehospitalization, we can better handle adverse events… this is not just your typical PSP.”
The time is right in France for these kinds of endeavors, admits Leygues.
“We want to restore the image of pharma, in France at least, to show that we can do really interesting things, that we can bring value, contribute to make the healthcare system more sustainable, and to be an ally for the healthcare community and patients. It’s not just about reputation but also shaping the environment, we want to change the way we evaluate products, so we can show their true value. Everyone talks about patient-centricity and patient experience and we wanted to say that we won’t just talk about it, we will act.”
Although regulators have tentatively begun to collect data from patient organizations to help evaluate new products, this is still very much in the experimental phase, she explains.
“The patient organization has only a few weeks to give feedback and they lack the resources to give quality feedback, so I am not sure it is taken into account as much as it should be.”
Celgene are keen to add fuel to this smoldering fire. A major project, called Humagine, sees them using patient insights to not only inform their own processes but provide novel solutions for patients, payers, and physicians.
According to Leygues, Humagine is a “do-tank”, going far beyond engagement to provide tangible solutions and concrete actions to two chronic diseases – multiple myeloma and psoriasis.
“The idea for us is to better understand how patients live on a day to day basis with a chronic disease… their emotions, how they need, the key moments on their disease journey. We want to focus not only on the patient but also on the person.”
This distinction is important, as it garners a new level of insight. By assembling a multidisciplinary board, including life sciences experts, patients, family members and caregivers, as well as clinicians, the idea was to dig down into complex psycho-social concepts that are typically impossible to incorporate into everyday practice. Following this, a literature review was carried out to identify and appraise current tools for collection of quality-of-life type data in patients with these conditions.
“The idea for us is to know if we can measure patient experience in broad definitions and which dimensions and concerns are important – social, intimate, professional. We want to know if we can objectify such a subjective concept.”
A staggering 80 different concepts to the patient experience were identified via this process, which the Humagine board distilled down into 10 or 12 dimensions in order to devise the definitive patient questionnaire.
“We started with a blank page and wanted to identify the main items that patients think are unmissable, then we used aspects of different tools to build a whole new questionnaire.”
Next, Celgene aims to validate the questionnaire – a crucial step, admits Leygues. “We are convinced that if we want to change practices, we have to convince the first person involved, which is the physician, so if we are not rigorous with our science and methodology, nothing will happen.”
And change is needed. Currently, the main tool used to measure the severity and extent of psoriasis is the Psoriasis Area and Severity Index, or PASI. Yet this measure is “irrelevant” to patients, claims Leygues: “You could have a big lesion on your leg that no one can see but if you have a small one on your face or your genitals, it has a big impact on your life. Our goal is to bring new ways of evaluating disease to patients, in order to show what really matters to people. We want to change traditional indicators.” Within a few years, this could mean new treatments being evaluated based on these new indicators, she adds; “not only the size of the marks, but the location, does it itch, this is what matters to patients.”
Adjacent to this, Celgene is launching an app, Humagine Profill, which aims to score a patient’s “illness acceptance”, a measure fundamentally linked to patient adherence and empowerment. “This will function as a useful tool for nurses, physicians, GPs, anyone who wants to open the dialogue beyond treatment efficacy and impact on symptoms,” explains Leygues. “If they are in denial, or resignation, it is much more difficult for the patient to engage with their medication, to adhere, to be persistent.” The pilot phase of the app will be complemented by a large-scale patient acceptance questionnaire, the results of which are expected next year. This will also help identify the biggest challenges that stymy the success of patient-focused initiatives, adds Leygues.
Humagine’s third work package aims to determine the wider ecosystem for patients with multiple myeloma or psoriasis in France; identifying current initiatives, and any national plans or strategies, supposed to help the patient experience. Patient focus groups allowed Celgene to ask patients what the key moments of their journey were; the resulting 200-page analysis is “really enlightening”, explains Leygues. This was then fed back to French experts in the conditions, including academics, health professionals, associations, patients, institutions and payers.
“We wanted to get their reaction to these insights, and now we will produce a white paper that will outline recommendations at a national scale to change things as they currently stand.”
Leygues will be sharing her wisdom at the Real-World Evidence and Access Europe 2018 event in April.
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