Patient centricity – how can we measure the impact?  Key takeaways from the NEXT Pharma Summit

Placing patients at the centre of pharmaceutical development is widely seen to improve patient outcomes. But what is patient centricity? How do you measure it? And how can digital solutions help? 

We look back at these core subjects following a recent panel discussion on the topic with Lode Dewulf, Sander Ruitenberg, Diane Cannon and Tim Ringrose.

What is patient centricity?

Patient centricity is often regarded as management speak, but the underlying ideas are important to patients. According to Diane Cannon, Corporate Partnerships Director at Melanoma UK, “[patients] get very emotional about patient centricity because we need to be involved, front and centre, from the beginning of the pharmaceutical [development process].” 

Diane was speaking at a recent panel discussion chaired by Lode Dewulf, with Sander Ruitenberg, Global Head, Connected Health Foundations at Novartis and Tim Ringrose, CEO of Cognitant. The panel agreed that patient centricity is “working with and for patients”. Diane added that it was, “putting patients at the heart of everything we do.” 

Measuring patient centricity  

Traditionally, the value of patient centricity was measured by inputs. These might include the number of patients attending a seminar or clicking on a website. Today, patient centricity experts are also beginning to measure outputs. 

Tim outlined three ways to measure the impact of patient-centric approaches on healthcare outcomes.  

 These involved checking for improvements in: 

1. Patients’ understanding of their health and treatment
2. Trust in pharmaceutical companies and other healthcare organisations
3. Health outcomes on an individual, or population, level

Tim explained that patients’ understanding, and trust, are relatively easy to measure using standard methodologies. Trust for example can be measured with a Net Promoter Score. Demonstrating improvement in healthcare outcomes, especially on a population level, has also grown easier in recent years, he said, “particularly with the emergence of big data.”

As a result, he said, “there are [now] lots of publications that incontrovertibly demonstrate that [patient] education has an impact.” He cited evidence that patient education reduces, for example, fetal mortality and improves diabetes management.  

“There’s a really interesting study in San Francisco that shows if you deliver an avatar-based digital education programme to patients with HIV, it increases compliance with therapy,” he said. 

Listening to patients 

Although quantitative measurement is important, Diane said that “how we measure [patient centricity] is simply to listen to what’s going on in our community.” She also emphasised the importance of supporting patients at different stages in their disease journey. 

Patient centricity “begins with getting involved with patient focus groups, attending advisory board meetings and asking for patient feedback”, she said, explaining that patient involvement should involve more than asking them to fill in surveys. They should also be involved in designing educational material. 

Understanding behavioural change 

“If you don’t understand the learning that a specific patient goes through, your [educational] content may not be appropriate,” explained Lode. 

He recommends an observational research, which delves deeper into the patient experience than simply observing behaviour. “It goes further than, for example, observing a supermarket layout and noticing people go into the grocery section, but you don’t know why,” he said. 

“You need to be very disciplined, breaking down what people are trying to achieve in the smallest detail possible. If I’m going to the grocery store, why am I there? Do I need to buy essentials? Or am I just bored?” 

Finding the right language to communicate with patients, structuring your thoughts and gathering the right insights is essential, he says, to ensuring that you’re not just passively observing what’s going on. 

Turning to digital 

“Digital allows us to interact with and engage more directly with people who have been prescribed medications,” said Sander. “And it also allows us to have more of a diversity of input and breadth of insights from unique individuals, which is very valuable.” 

Melanoma UK has also embraced technology “and have access to patients in whatever way they choose,” says Diane, who explains that 60% of melanoma patients in the UK have engaged with the organisation. Some of them jump onto a phone call while others engage via the charity’s private Facebook group.  

Patients often want to “dip in and out” of technology, says Diane, and not rely solely on online solutions. What Lode is seeing more frequently are patients who like automation as a first response, or for immediate access to information, but who also like the human touch. 

“I think sometimes patients feel a little trapped in the digital world because they fear they can’t get to a human when they need them,” he argued. “We need a hybrid model of augmented intelligence, rather than artificial intelligence, and I think we need to reassure them.” 

Solving patient centricity 

“Healthcare services are overwhelmed, and some parts of the world don’t have access to basic healthcare, so it’s upon all of us to improve the ability of people to manage their own health and make the most of limited resources,” said Lode. 

Pharmaceutical companies shouldn’t assume they know the best way to communicate with patients, said Tim, as it’s going to be different for everyone. Instead, companies should engage with patient organisations as soon as possible because “we want to be involved with you,” said Diane, “so just ask.” 

In summary 

Companies need to be clear on where they’re intending and expecting to have impact before they can measure it. “In a world of diseases and treatments, most people don’t want to be reminded about their disease – they just want to live their lives,” said Sander.  

He added: “Most of us don’t have a chronic disease. We need to understand our own biases and talk to patients to understand their reality. Good insights, good planning – all these are important before embarking on a development journey.”