Finding the right way to listen to patients

As our market access month continues and pharma seeks closer patient engagement to better understand real-world outcomes, Carly Brown outlines a number of ways to conduct patient research and weighs up their relative uses.

We are in the midst of an explosion of ‘patient-centricity’ so far as the pharma industry is concerned, at least in what is being said. However, there is good reason to believe that the promises go beyond words as the industry realises that better patient engagement is not just about reputation, but is also critical to understanding real-world drug outcomes and the consequent evidence they provide for market access.


“We are in the midst of an explosion of ‘patient-centricity’ so far as the pharma industry is concerned.”


As the patient voice comes to the fore there are a number of routes emerging to obtain such feedback on real-world use of medicines. The question is – which is best? In reality, they all have their uses, as outlined below.

Online communities / social media sites

There has been a proliferation in the number of online communities for patients over the last few years as isolated sites driven by particular disease-oriented organisations or lone, vocal epatients have developed into new business models structured around providing pharma with patient research and clinical trial recruitment. It is a sign of the times that the ex-Google health chief has even launched such a site for cancer patients.

These communities first and foremost provide fantastic support networks for their patients, but can also be used to ask defined groups of patients appropriate research questions. Provided the rules of engagement are transparent this is a win-win for both sides and rich information can, in theory, be obtained quickly and efficiently.

One challenge though is that not all patients elect to be involved in such research and the information provided is dependent on the accuracy of recall when looking back at historic factors, so qualification of more immediate needs is the richest data. Social media monitoring of public data can, in theory, remove the block of opt-in, but the challenges of piecing it together in a meaningful way remain substantial and there are some ethical concerns here too.

Patient advisory boards

Patient advisory boards are not new, having been conducted for many years. The idea is not dissimilar to using online communities, but instead gathers a small group of patients together (normally in person, although virtual advisory boards are becoming more common) to provide direct feedback and explore aspects of disease management in greater detail.


“Here, the doctor effectively becomes the researcher, drawing on their recall of patient interactions or the actual medical records.”


The information provided by such boards can be extremely rich, but tends to be more of a qualitative nature by virtue of limitations on group size and, again, the challenges of patient recall come into play. But in terms of the ability to prove points in great depth and be responsive to initial responses, few channels offer such value.

These advisory boards are, of course, not cheap to run, with careful processes needing to be in place to ensure regulations are not breached with such direct patient engagement, so can cause compliance teams some degree of nervousness!

Patient record studies

Patient record studies have also been conducted for some time, albeit seeing their methodology adapt and develop as the way in which patient information is stored has increasingly moved online. Here, the doctor effectively becomes the researcher, drawing on their recall of patient interactions or, more often, the actual medical records.

As such, they can provide accurate quantitative information around historic treatment choices, clinical benefits and also allow segmentation by demographic and clinical factors that the doctors are familiar with, such as BMI or occurrence of associated comorbidities. More recently, doctors have also been utilised for more direct research with the patients, where they ask them specific questions and report back anonymously.

Whilst not possessing the same theoretical scale of online communities, with the right physician training this approach can provide substantive volumes of verified quantitative and qualitative information. After all, the doctor is often closest to the patient, so is well placed to conduct such research from a medically-qualified perspective.

Electronic medical records

As electronic medical records emerge, driven at the moment largely by developments in the US, will other techniques be consigned to the history books as the raw data becomes more accessible? Probably not for a while, is the simple answer. Many doctors already record patient information electronically, but the challenge here is providing a uniform system that allows data across regions to be brought together.

The failure of the UK’s £12bn NPfIT programme shows just how hard it is to unify such record taking and extremely significant sums of money are being invested in numerous new systems that seek to pick up the mantle. Whilst privacy concerns are often cited as the challenge here, the real problem is getting everyone to use the same system and record data appropriately if it is not what they are used to. Even if they do, direct access to the data by third parties would still lack some of the additional commentary that can be provided by medical professionals and patients themselves.


“The only option that seems completely unviable is to not listen to patients at all.”


Choosing the right route

Ultimately, it is impossible to say that one route is generically better than another, with the right research technique depending on a number of factors relating to what is required from the outputs including specific patient demographics, preference for qualitative or quantitative data, quality of data, volume of data, cost and speed of delivery.

The only option that seems completely unviable is to not listen to patients at all. If the current trend towards looking at real-world outcomes for assessing the value of medicines continues, then patient feedback on how medicines really work, or not, could eventually become more valuable than clinical data.

Download the free white paper from All Global entitled ‘Doctors hold the key to understanding patient outcomes’ here.



About the author:

Carly Brown is an expert in global healthcare quantitative data collection strategy and execution. In her role as Director of European Business Development for All Global, Carly is responsible for business development, account management and strategic planning. She has been instrumental over the last 7 years in developing All Global’s quant offering with a specific focus on complex patient record methodologies.

All Global are international healthcare data specialists. We provide high quality healthcare research services for global research companies and agencies across North and South America, Europe and Asia Pacific. We will partner with you to find the right combination of methodologies – qualitative and quantitative, online and traditional – to produce bold, considered, clear research that puts you and your clients ahead of the competition.

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