In the first instalment of our Ask Me Anything series, Jeffrey Hirono, Global Head of Insight at Impatient Health, speaks to us about the importance of qualitative data and building trust, in overcoming the challenges that face patient engagement today.
What is a person-centric future and how is it different from patient-centricity?
When it comes to patient-centricity, I think we need to start pushing boundaries, past the tension of the current status quo and into a state of inspired ambition to be more person-centred. And I mean person, instead of patient-centred. Here’s why.
A person-centred approach takes on a more holistic approach. We need to understand that improving patient outcomes doesn’t always necessarily mean we are being patient-centric. Here’s a common example. Through treatment, we could prolong the life by months or years of a person living with cancer, but quality of life could potentially decrease. And I think our industry’s focus on biomedical intervention is not enough; we need to expand and envelop the whole person. We need to begin to understand people’s motivations and aspirations and to account for quality of life (QoL) and the social determinants of health (SDoH) to better understand patient realities and lived experiences.
Unfortunately, today, we are seeing pharma viewing patient goals in terms of clinical outcomes. Should we really be viewing and defining patients solely on a disease or condition? From my conversations with senior leaders, there’s a slow, but growing, momentum towards involving patients (and HCPs) as core-contributors – equal partners in informing pharma’s functional strategic objectives and co-creating future patient-centric solutions.
And, there is a business case for this: How better to future proof an industry than by involving patients? By delving into patients’ QoL and SDoH—and accounting for these often analytically messy insights—we can drive better solutions that are relevant and meaningful for patients. Not only does this build trust among patients and patient communities, it also effectively audits our solutions and our processes. This can encourage and motivate patients to continue engaging in the work that may, ultimately, affect their lives.
Shifting towards a more holistic understanding of patient realities relies heavily on qualitative research of a kind that pharma is generally uncomfortable with. Today, we find that pharma isn’t using the right tools or bringing in the right expertise for patient engagement. However, I believe pharma is standing at a pivotal crossroad. Should pharma continue its status quo or transition from a narrow, disease-focused perspective to a holistic, person-centred approach? By embracing a ‘whole person’ approach by meaningfully integrating the insights from patients’ lived experiences, we can develop solutions that resonate deeply with their needs. This not only fortifies trust but also ensures the industry’s relevance and resilience in the future.
What are the major challenges you see when it comes to pharma involving patients in decision making or to develop patient-centric strategies?
Identifying the ‘right’ patients:
Pharma can sometimes (not always) choose the easy way out, especially when it comes to engaging with patients. Often, pharma ends up talking to the same patient advocates or what some call “professional patients.” Whilst professional patients are crucial, their voices can sometimes drown out and overshadow the experiences of other patients, especially those who might not want to engage with pharma and just want to get on with their lives. Often, these are the same patients hit hardest by their conditions. It’s also not always easy to reach out to these patient groups, as there are a bunch of factors like social, economic and personal situations that can create – or reinforce! – barriers to engagement.
When capturing feedback, more isn’t always better. Just because pharma is talking to more patients, doesn’t mean they’re getting the insights they need. Patient feedback can sometimes get watered down or may not even apply to all patient communities. When you add in the heavy focus on these ‘professional patients’, we may end up with a skewed view that only captures a slice of the patient population. Typically, those who have a higher health literacy also have the agency to self-advocate effectively and the means by which to be more actively involved.
And lastly, let’s face it, pharma isn’t exactly quick to jump on new ideas. When it comes to reaching out to more patients or getting better data, the industry can be slow to change. This could mean connecting with patient organisations, using social media or even reaching out to patients through other channels. To be fair, there are also some real challenges here. Compliance and regulatory issues can make it tough to use these strategies without seeming like pharma is trying to sell something.
Pretty much everyone in pharma is wondering how they can track the impact of their efforts from their patient engagement activities. The problem is, pharma can sometimes be all over the place; different functions don’t always communicate with each other, and, more often than not, they have different goals and ways of doing things. This is reflected in the distinctive KPIs each function sets out, and unfortunately, most of these KPIs aren’t patient-centred, let alone person-centred.
For example, if you look at the sales and marketing side of things, their KPIs are about tracking sales and lead measures, and how well they’re connecting with HCPs. Over in medical affairs, they’re keeping tabs on their engagement with key opinion leaders. And the clinical operations people? Well, they’ve got their own set of KPIs, like how quickly they can recruit patients for clinical trials and how well they’re keeping those patients in the study (aka: retention/attrition rates). While these are important KPIs, they don’t mean much to patients. And, these different metrics can lead to a lack of consistency in how pharma measures impact across the company.
Because of this, no one’s really managed to come up with a solid framework for patient engagement that can map patient-focused KPIs across the entire company. What’s clear, though, is that the current KPIs aren’t measuring what matters most to patients.
To tackle this issue, we need to figure out what patients really want and need. How can we turn a new leaf and start to better understand how medicines are actually helping patients live fully beyond clinical outcomes? There are some pioneering companies that are looking at developing new frameworks for patient engagement that could work across functions and which aligns with company-wide goals of putting the patient first. This is hopeful and a good step towards person-centric approaches.
How can we ensure that a diverse range of patient voices are heard and valued in our patient engagement efforts?
In the realm of patient engagement, it’s crucial to understand that not all patients have an equal opportunity to be heard. There are various social, economic, or structural barriers that can limit a patient’s ability to engage with pharma. These considerations must be at the forefront during patient recruitment projects.
Like I previously mentioned, one of the significant challenges lies in identifying the ‘right’ patients. While pharma often seek out patient advocates or “professional patients,” their voices, although important, can overshadow the experiences and perspectives of patients who are most in need. Therefore, a more inclusive approach to patient engagement is necessary – one that identifies and engages a diverse range of patient groups.
Building trust forms a significant part of this process. Pharma companies are now prioritising partnerships with a variety of patient groups and organisations. The aim is to gain a deeper understanding of patient realities and rebuild trust. This involves engaging patients in environments where they feel most comfortable, such as in community or in settings where patients feel empowered to engage.
To further build patient agency and trust, establishing core values around a new definition of person-centricity is important. These values should be based on what person-centricity means to both patients and pharma. A potential strategy could involve creating a ‘Meaningful Involvement Standards’ charter, co-developed and co-consulted with patients, patient communities and patient advocacy organisations.
Measuring the impact of these efforts is key to ensuring its success. This involves co-identifying and developing person-centred indicators, which should include QoL and SDoH measures. These indicators can be meaningful for both the company, its functions and patients, whilst also providing a clear understanding of what success looks like and how to measure the effectiveness of patient engagement activities.
How can pharma build trust with patients and patient communities?
Building trust with patient communities is a multifaceted process that requires a thoughtful and person-centric approach. One of the key issues that pharma faces is the patient perception that patient engagement is being ‘forced’ upon patients. This perception arises when pharma companies approach patients with specific questions, conduct a few focus groups here and there, and then leave without further communication, leading to patients feeling used. This approach is seen as disingenuous and commercially driven, which can erode trust.
To rebuild this trust, pharma should prioritise partnerships with a range of patient groups and organisations. The aim is to gain a deeper understanding of patient realities. As I’ve alluded to earlier, the goal is to shift from being an outsider looking in to becoming an active participant – or even an ally and advocate – for patients and patient communities.
In this context, we should consider bringing in social scientists and health equity specialists into pharma roles. These professionals can provide valuable insights and strategies, help build & maintain meaningful relationships and address some of the challenges that arise in patient engagement.
How can we ensure that our patient engagement efforts are meaningful and not tokenistic?
Ensuring that patient engagement efforts are meaningful and not tokenistic requires a comprehensive and thoughtful approach. One of the key aspects is the development of a validated patient engagement framework that can map patient-centric KPIs across functions. This framework should be developed, tested and validated, with the aim of aligning functional objectives to company-level goals. It should also improve the ability to communicate success both internally and externally. This is not a simple task as it requires a shift from often singular, functional objectives to a more integrated, cross-functional approach.
The process of creating a meaningful patient engagement framework should involve a deep understanding of what patients truly want and aspire to, but also attaining cross-functional alignment. This involves a strategic approach in defining what each functional objectives are and identifying a common ground, which can form the basis of a shared patient engagement framework.
Jeffrey Hirono is Global Head of Insight at Impatient Health. Leading Impatient Health’s Research centre, he aims to inform, excite, and disrupt life sciences by engaging in new ideas and perspectives that drive positive outcomes for patients and life sciences.