Different Perspectives on the Burden of Disease

Authored by Cello Health, now part of Lumanity

What do medical market research and health economic outcomes research have in common? How can we combine our work on burden of disease in a way that realizes it fullest potential? What can we learn from each other’s approach?

Our starting point

As we became acquainted with the work of our colleagues in the health economic outcomes research world, we came to realize that we overlapped in areas of research with patients, but that in other fundamental ways we were differing – for example in our perspectives and in the language we were using. It was fascinating to us – and hard to grasp the subtle and not so subtle nuances between our work. What one took for granted was in turn alien to the other. Yet we were asking the same questions very often and sought the same answers. We decided to get to the bottom of what we shared and how and why we expressed the same basic information in such different terms. We thought it was a great topic for a White Paper! But how to structure it when we spoke different languages?

We were both aware that our work had greater potential with wider audiences than each currently served, but the marketing and the health economics worlds demanded different styles of communication and adhered to different structures and boundaries.

As conversations evolved, we decided to focus on the key differences between us that challenged attempts to bring the two areas of research closer together and thus satisfy both of our audiences at once. We wanted to reduce wasting knowledge that we each had carefully crafted from our research – could it not be useful to other parties too if only we could find a way to make it palatable, relevant and credible. After all each of our clients gave credence to the research we delivered, but for some reason the insights did not seem acceptable or rigorous enough to a wider audience.

Here is what we found: and I am speaking from the perspective of a market research agency as that is what I know best. I wish to stress I am not suggesting that either the MR approach or the HEO approach is better or worse: I am merely concerned with understanding their points of difference

Our definition and focus

In our market research world, we frequently are asked to scope out the holistic disease burden/impact of the disease landscape (we don’t tend to use the specific term Burden of Illness). The burden is rarely seen as a static state, but is viewed as an evolving process across the patient’s journey with the disease, from first symptoms through diagnosis and treatment lines. We pay attention to a number of different domains – the clinical, the practical, the emotional, the social and the financial. In addition, we capture the disease burden on the caregiver / family across time.

In those respects, there seems much similarity between what we set out to do and the HE outcomes research; but our intentions differ.

As market researchers it is fair to say that our aim is to understand the patient experience at differing stages of the disease, in order to look at what behaviors might be changed or improved upon. Perhaps it is this very goal that makes the scientific mind skeptical? Skeptical that the insights are biased, skeptical that they fall short of being objective.

Who are our clients and what do they want to know?

Our market research clients are from pharmaceutical companies within regional or global marketing and/or business intelligence who are looking for insights to help them to understand the patients’ experience of their journey – the burden of their disease and of its current treatment. Indeed it is difficult to separate the burden of illness and patient journey objectives. In essence, they want to know this in order to better serve their patients, improve HCP communication to patients and ultimately better market their products.

Nowadays, many other stakeholders are also included in kick offs and debriefs that we didn’t encounter so much in the past: country affiliates, medical affairs, market access, patient advocacy. They are often vocal and add complexity to the project, but they do not hold the purse strings. They can though steer the objectives and they can have different agendas to each other.

To meet our clients’ aims for a project uncovering the disease and treatment burden, we listen to the accounts of patients describing their experiences over their journey and from these identify commonalities such as:

The typical symptoms at different levels of severity and their impact on daily activities
The emotional and psychological burden that comes with the disease on the patient but also their families
The actions taken by patients to gain treatment, the touchpoints with the healthcare system
The triggers and the barriers to timely diagnosis and treatment
The points on their journey where they have unmet needs and feel unsupported or uninformed

We do this with an eye to spotting ‘roadblocks’ or ‘pain points’ in the system that prevent the patient receiving appropriate treatment and to identify potential support solutions that could improve the current situation (if it isn’t optimal).When and how could interventions be made that would keep the patient activated around their disease and treatment? What other types of intervention might accelerate access to treatment?

Optimal for whom one might ask? Well ideally the patient, the physician and the pharma company share the same idea of optimal. But if they don’t, then our goal is, of course, defined by the pharma client.

Handling the emotional component of the disease burden

Whilst both health economics research and market research pay attention to the emotional impact of a disease, our discussions revealed a fundamental difference in this respect.

It seems that market researchers often place more weight on the emotional and motivational side of things than those in health economics who are required to exclude more subjective aspects. Our colleagues explained that this is because scientific rigor demands objective evidence that will stand up to scrutiny which is perfectly understandable given its purpose. As a psychotherapist, with a life-long interest in psychology and mental health, on some level I struggle with ‘neutralizing‘ the emotional dimension of disease as feelings along with beliefs are a strong driver of behavior (or barrier to action).

Real life is a mix of the objective and rational and the subjective and experiential. Someone in the throes of a life-limiting condition experiences intense emotions; at times they are in shock and overwhelmed, at others they feel angry or sad, they may come to peaceful acceptance. The emotional backdrop influences their needs, their receptivity to new information, their information seeking behaviors, their need for caregiver support and their dialogue with their physicians. In other words it is an intrinsic component of the burden of the illness. I understand that emotions cannot be measured easily and are fluid and variable day to day but one cannot talk about the burden of an illness on a patient and their resultant quality of life without taking the emotional dimension into the equation. Mental health counts. There is a growing awareness out there in the world at large which now recognizes this; that physical health is affected by mental health and vice versa. They go hand in hand.

This led us to wonder – is there a way to bring the subjective into the calculations underlying decisions on the value of a treatment in alleviating disease burden? Is there a language which can work for both the market research stakeholders with their commercial bent and for the scientific health economists? Is there a shape of output from research which be trusted and relevant to both? How can we bring the best of each of our perspectives together?

In recent times both the FDA and the EMA are looking to try to find a way to incorporate the patient’s perspective into value assessments. This is progress.

There is also been development in the language which seems to be acceptable in both worlds – the language of behavioral science. This brings a more scientific lexicon to psychological theory. It offers validated models which scientists can hopefully have trust in, whilst also making sense to those of us in the market research camp. It is building bridges between our siloed worlds.

Our pharmaceutical industry clients are increasingly asking to understand the multi-dimensional, layered nature of real life; for nowhere is that more necessary than when dealing with human beings in a state of crisis, shock and illness. They ask us to paint a picture of what the patient actually experiences and how they speak about their disease burden. Patients may not be clinical experts, but they are the experts on their own lives. This more subjective and emotional viewpoint is lent robustness through the application of validated models of behavioral science.

Who we conduct research among and our methodologies

Interestingly, the approaches employed by market researchers and the health economic outcomes researchers very much overlap, but we as market researchers are being asked more and more to expand our methodologies. In terms of respondent types, market research and HEO research overlap significantly – patients, caregivers, patient support associations and relevant clinicians. However, in market research we typically use multiple lenses in the approach. It is not uncommon for us to talk to all of these stakeholders in a single project, across several countries, and to adopt different methodological approaches as well. More and more we combine individual in-depth interviews, duos or focus groups (now online due to COVID-19), supported by social media listening and semi-ethnographic approaches (video upload), often followed by quantification.

In addition, market research clients like to be immersed in the research to gain the buy-in of all stakeholders and increase the relevance of the research to meet their needs – reviewing guides, watching virtual central locations, receiving interim headlines of findings and agreeing the final outputs. These multiple lenses provide a comprehensive overview of the patient’s experience of their disease in the context of their life, and emphasis is often placed on ‘getting below the surface/obvious’. Alongside the objective and tangible aspects of their burden over time, we very much want to understand the emotional and intangible aspects.

The things that the patient believes, feels, needs or desires in relation to their disease and treatment. We look at what they actually do versus what they think they do, because so often the two do not marry up and there are disconnects due to denial, avoidance, biases, coping mechanisms or normalization of chronic symptoms. The subjective and intangible are now receiving greater credence due to the overlay of behavioral science onto market research, which is a growing trend and arguably a paradigm shift. Behavioral science recognizes that people don’t act/make decisions based purely on evidence (and even scientific evidence is rarely unidimensional and is subject to different interpretations/value judgements, depending on the ‘eye of the beholder’). So we cannot leave the ‘human factors’ out of medical assessments and decision-making.

Timelines

Despite this expansion of methodologies, market research timelines are typically much shorter and tighter than burden-of-illness HEO studies. It is so often a race for a finish line determined by internal deadlines. The process can be accelerated at any time and we are forced to be pragmatic to achieve them – for example we may need to provide top line results on part of the sample or after each research module, constantly keeping the client in the loop.

We are required to deliver the macro view, the key takeaways especially for higher management. Our clients less and less want the micro, the detail, the reportage. They want our interpretation of the findings based on our extensive experience. It is often what they buy us for. This means that as market researchers we intentionally layer onto the results of our investigations what we feel the results mean.

Our lexicon

Finally I come to the languages we speak and are drilled in and here the difference is particularly marked. We speak different languages and have different lexicons. In market research our language is less academic and needs to ‘engage’ the audience. The clients say that they do not want ‘death by PowerPoint’ any more, dry detail ‘turns them off’ – they demand interactive visual presentations, video clips, tight clear and actionable findings. In other words, they want storytelling with evidenced / supported points of view. The vast amount of data collected in each of our global studies with multiple stakeholders could be analyzed and studied for many months – each holds a wealth of information – however, practicality and deadlines are of the essence and hence we provide what is needed, when it is needed and ensure it is communicated as clearly and as ’instantly’ as is possible. I hasten to add we do not distort findings or say what clients want to hear. We tell the truth of what we find and we deliver the message in as vivid and professional a manner as we can.

This opinion piece is simply based on my knowledge as a seasoned market researcher of our disease burden work and how it has been shifting. Our clients inhabit a fast-moving commercial world and they have to accept that sometimes their decisions have to be made on imperfect or incomplete evidence.

In summary, our disease burden market research has evolved in response to our clients’ needs and moved further away from the academic purist rigor that HEO stakeholders require

To capture the real world disease burden as it is ‘lived’ through multiple lenses (verbal, video, observational, social media listening) and from the perspective of multiple players (patient, caregiver, patient support representatives, HCPs)
To see the patient in context and holistically – as a person perhaps with co-morbidities, juggling roles and responsibilities, with feelings, misconceptions, ‘irrational’ in their behavior at times. The psychological and emotional dimensions need to be explored alongside the behaviors and reasoning if the patient’s disease is to be fully understood and their journey optimized
To increasingly make market research engaging and actionable and ‘to the point’

There are signs that HEO decision-making is also moving (more slowly) in the direction of encompassing more than just clinical data, and towards incorporating the ‘patient voice’. Currently still in a way that gathers evidence from patients in a very scientific, structured way and communicates the evidence in the academic language that their stakeholders are used to and understand

I do not have the answer as to how to bring together burden of illness research carried out by market researchers and HEO researchers to increase their acceptability and value to a wider audience. We clearly have lots of common ground but some significant differences remain. Hopefully, ‘there is a will to meet in the middle’ since ultimately understanding of the patients’ burden of disease and the relief of that burden are the common end goals of all such work.

As market researchers it is fair to say that our aim is to understand the patient experience at differing stages of the disease, in order to look at what behaviors might be changed or improved upon.
Perhaps it is this very goal that makes the scientific mind skeptical? Skeptical that the insights are biased, skeptical that they fall short of being objective.

It seems that market researchers often place more weight on the emotional and motivational side of things than those in health economics who are required to exclude more subjective aspects.