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Thought leadership and innovation for the Pharmaceutical Industry

Gathering evidence directly from patients is a new endeavour for many, but it has great potential value in generating evidence and generating insights that can help drastically shorten the timescales for innovation and improvements to outcomes.

 

Yet in the era of the supposedly patient centric pharma company, relatively little is so far being done at scale to understand the experience of patients.

 

Neglecting to examine the data on the patient experience means missing out on the chance to gain profound insights into the details of unmet needs in particular parts of a patient cohort. Doing  so can also throw light onto the factors that motivate particular behaviours (good or bad), and into new ways to drive better outcomes by creating new products or augmenting existing ones.

 

And the good news is that the right technology and partnerships can now enable pharma to engage directly with patients at scale and gather transformative insights in real time with relative ease.

 

Real-world insights

The Michael J Fox Foundation is one such pioneer. It established Fox Insight, an online clinical study where people with Parkinson's disease and their loved ones share information that could transform the search for better treatments by providing real-world information on symptoms, daily activities and other factors through online questionnaires.

 

Understanding how patients experience their conditions may seem a somewhat fuzzy undertaking, one that is qualitative rather than quantitive, but it is in fact a source of useful data.

 

The potential benefits are extensive, says Tara Hastings, Senior Associate Director, Research Partnerships and Patient Engagement at the Michael J. Fox Foundation for Parkinson's Research. “We are always evaluating what we do through the patient lens [because] we will never truly have a picture of the disease without understanding the lived experiences of people with Parkinson’s Disease.”

 

The ongoing project gathers self-reported data from more than 70,000 people on symptoms, daily activities and other factors through online questionnaires as well as through additional one-time surveys. 

 

Measuring the patient experience in this way can tap into a much wider and more representative patient population than the ones that took part in trials, says Hastings. “Its online nature and broad eligibility criteria allow people who may not participate in traditional research to be able to share their perspectives.”

 

Analysis of the data generated has led to valuable insights into specific patient cohorts and revealed unmet needs during different disease stages, by capturing data from a ‘narrative’, natural language context, that captures insights other surveys would not. 

 

The value of narrative data

For example, Fox Insight posed questions about the most negative aspects of living with the disease via the Patient Reported Outcomes of Problems project, in which over 10,000 patients rated up to five problems on a scale of 0-3.

 

The project captured over 45,000 problems and used natural language processing to pull out common themes to better understand the experiences of those earlier in the progress of the disease and also of those later on.

 

It revealed that for more than 46% of participants, the most irksome symptoms were unlikely to be captured by existing questionnaires. “This study emphases the value of narrative data in understanding patient experiences and what is most bothersome for them.”

 

Insights included, for example, the fact that pain in the early cohort was a common factor that had often not been discussed. The project also offered insights into some little understood negative aspects of ‘off’ periods (when symptoms return between medication doses), such as movement symptoms but also non-motor symptoms such as anxiety or fogginess. 

 

“Understanding the language patients use can help improve provider communications and improve outcome measures,” says Hastings.

 

Taking the longitudinal view

Gathering such evidence is also potentially open ended and so the value of such longitudinal data grows in value over time, adds Hastings. “We can look back and find associations and trends. We have collected more than 1.3 million survey responses and made that data available to the research community in near real time.”

 

Qualitative insights are not the only way to map the patient experience. It is possible to gather data around the patient experience in ways that are both simple and powerful, says Sam Marhawa, Chief Commercial Officer at Evidation, the behaviour-focused health technology platform.

 

As well as gathering data direct from patients about their experiences, it is possible to infer patient experiences based on other measures based on their activity, for example what their heart rate may says about their stress levels, or other factors that can be tracked with wearables such as activity levels, says Marhawa. 

 

“You can get a lot of insight from watching their activity, which can be a strong indicator of their experience, such as whether they are engaging more regularly, or how they engage with or respond to various offers or requests, such as coming in to get a lab test. Implicit measures are very effective at building an understanding of experience.”

 

Patients’ experience in the real world can also be inferred by examining the subtle deviations from the norm, such as weight gain, for example, or if they stop responding to a daily survey two days in a row, perhaps then triggering an alert that allows someone to engage and provide a more targeted intervention.

 

Tracking patients data in this way can lead to a deeper understanding of the markers of disease progression and therefore can provide insights that can help enhance or expand a therapy, says Marhawa. “Training your algorithms can help create digital biomarkers that are indicators of disease progression or of behavioural responses, which are then the property of pharma.”

 

It can contribute insights to improving patient support programmes and improve the efficacy of care. For example, understanding the motivations behind certain behaviours by tying the data on how patients feel to the actions they take (or fail to take), can lead to new insights on improving adherence or changing lifestyle habits that lead to better outcomes.

 

The data can also be used to test different interventions, says Marhawa. “You could do A/B testing on behaviour. There is a lot of stuff you can test, creating a learning mechanism. Creating that closed loop of measuring, analysing and creating feedback on what is working or not, can be scalable for pharma."

 

This also also has the potential to enable pharma to become a far more valuable partner with HCPs in managing patient care.

 

The ultimate application of the data would be to use the insights gathered to help train the algorithms in digital therapeutics. The potential to create enhanced drugs-plus-software therapies and to be able to demonstrate better real world outcomes to payers is clear.

 

Given the potential of technology including internet surveys and wearables to gather both hard data on specific markers of disease along with qualitative insights into the what this means day to day for those living with those diseases, the future is bright for those capable of harnessing it. 

 

“Data coming from patients creates the possibility to have a one-to-one relationship with the patient,” says Marhawa, “to build a true learning system and drive down to the next level of change.”