As an industry, we have such a positive story to tell. Medicines and treatments benefit billions of people. Yet, two-thirds of patients do not feel listened to by pharma companies (1). There's no shortage of opportunities to do things differently when it comes to involving patients. However, making sure patient insights and experiences impact the drug development and innovation process is something else. It's essential to draw on patient knowledge and experience to understand what it is like to live with a specific condition, how care is administered and the day-to-day use of medicines. This input helps to improve the discovery, development, and evaluation of new effective medicines. The European Patients' Academy (EUPATI), a pan-European Innovative Medicines Initiative project of 33 organisations, has published the helpful diagram below with areas for patient involvement in the R&D process. So, with all these possibilities for patient involvement, how can we listen better to patients? And how can we accelerate the process of learning to inform the products and services we develop?
At IDEA we take patient involvement beyond the traditional market research of patient focus groups and questionnaires. We invited some great like-minded partners to contribute to this article: Mark Lightowler, an industry-vet who started his own company Phorix, a behavioural change design agency, and Jen Horonjeff, founder and CEO of Savvy Cooperative, a patient-owned healthcare research and insights co-op.
Pharma’s approach to patient involvement
Let's unpack why patients don't feel listened to by pharma companies. Many patients want to share their experiences with pharma companies. However, traditional market research approaches drive the agenda of the sponsoring pharma company and the answers they're looking for. Mark: "When we ask logical questions, we get logical answers. But now imagine women diagnosed with breast cancer, it's complicated - how they are feeling, how they're reacting emotionally - none of it is logical to them." Jen: "We've seen a renewed interest in diversity, equity and inclusion. Where industry used to talk to only a couple of patients or guessed what patients want or need, they're now faced with those conversations about diversity and inclusion. Not only do you not know what it's like to be a metastatic breast cancer patient, but you don't know what it's like to be an African American metastatic breast cancer patient." This increased awareness of more representative patient voices and the value of getting those outside perspectives increases understanding of what matters most to people. Jen elaborates on why this is so important to achieve patient-centred outcomes. "Outside the clinical markers that we have traditionally measured, there are lots of other things that affect somebody's health and health behaviours. What's important to a patient, their families, and living their lives may not be the same as what is important to a provider, a pharma company, or a payer. Therefore, we need to also think about measuring what matters to patients so that when a drug comes to market after 10-15 years, patients can make an informed decision together with their healthcare provider based on the outcomes most important to them."
Signs of success: patient outcome-centricity
The ultimate goal is to bring medicines to market aligned with desired patient outcomes and make pharmacological or digital health interventions hyper-relevant when needed. Ethnography and anthropology approaches help understand when, where and how outcomes can be affected and move away from the standard transactional approach that looks at physician interactions like "identify symptoms, diagnosis, start a treatment". For example, going to the hospital, parking the car, or taking public transportation, walking, waiting in the hospital, interactions with hospital staff – that whole process is equally important as the treatments patients receive to treat their health problems. Although there are many things about the experience, it's also essential to look at patient health literacy levels, everyday language, linguistics, and semiotics. Mark: "When you put the full patient experience in the centre, you get a completely different patient journey. You get to understand their behaviours – and how behaviours affect outcomes."
Patient outcome-centric journeys provide insights about what may be outcome-enabling or what might be outcome-inhibiting. When we allow ourselves to think differently about the patient experience, we can also find different approaches to when, where and how we engage with patients as pharma. Mark: "if you want to shift outcomes, you need to think holistically, not specifically. We need to get our minds into parallel complexity. That means we must think about the lived experience, the efficacy and the efficiency." The patient's lived experience is taken into consideration by medical teams and becomes a standard to assess the goals and the quality of patient care in many societies and health care systems (2).
Patients have experiences and knowledge of their disease that are important sources of information in relationships with healthcare professionals (3) to adapt and augment treatment with holistic approaches, including monitoring, pharmacology, psychology, to improve quality of life, and to find solutions that will enhance the quality of care.
Barriers to overcome for patient involvement
To get to holistic patient involvement at scale, we spend the final part of our conversation talking about the barriers that need to be overcome. Savvy provides a platform where pharma professionals can easily access diverse patients and caregivers to get patient insights. Patients have become more aware of the value their feedback and data can bring to help develop better products and services. How do we equitably engage patients and caregivers in the drug development and innovation process? Jen: "There needs to be some value exchange when we do patient insights projects. At Savvy, we make sure that patients are fairly remunerated for their participation."The next tier is about re-thinking how patients are compensated for the value they bring when they participate in clinical trials. This is about people who put their bodies on the line to help science advance as well as considering the practical things like people who need to take time off from work to get an extra MRI scan or blood sample taken as part of the trial protocol. Jen: "I believe in the future that patients will own their data and be able to select to share that data with people and providers who add value to them. Patients want choice and to know they are being equitably valued, and if we, as an industry, are not willing to consider this, then we're not going to get diverse insights or representation in trial participants."
The design of incentive and value exchange systems in our industry is complex. New ways of thinking are welcomed as the advantages of patient involvement are evident. So, let's try to accelerate the thinking and get all relevant stakeholders at the table to think this through and find other ways to approach this.
Would you be interested in taking part in the conversation and take innovating with patients to the next level? We'd love to hear from you – do reach out on our social channels or contact Jacqueline.Barendregt@ideapharma.com . To be continued!
2 “Patient’s lived experience” New insights from the “scene” of deep-brain stimulation medical care; M. Gaille; Medicine, Health Care and Philosophy volume 22, pages339–342 (2019)
3 Including Patient’s Experience in the Organisation of Care: The Case of Diabetes; N. Battard, S. Liarte; Journal of Innovation Economics & Management 2019/3 (n° 30), pages 39 to 57
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