Embracing next generation patient centricity

Pharma has largely accepted the value and importance of patient centricity – now it’s time to scale it up and measure the results.

The latest in eyeforpharma’s series of Trends in Patient Centricity “mini-magazines” reports that the pharmaceutical industry has wholeheartedly embraced patient engagement, and is ready to take things to the next level.

A foreword by Giselle Quartin, head of the company’s international division, and head of product Josh Bramwell, says: “Patient engagement and involvement is now widely seen as a fundamental element in the success of our industry.

“The idea of creating anything – a medicine, an app, a service – without the involvement of its ultimate ‘end user’ has thankfully been consigned to history. We are now moving beyond engaging patients to spreading a patient-focused mindset throughout our organisations.”

The project, however, is “far from complete”, they go on, saying the challenge now is learning how to measure success and moving from pilots to full-scale rollout.

Finding the right metrics

While the patient-centricity movement is now firmly entrenched in pharma, relatively few companies are measuring the impact of their efforts. The figure, according to the most recent Aurora Project benchmarking survey, is just 42%, says the report

Part of the stumbling block is uncertainty around what to measure, compounded by a lack of tools and metrics.

“Patient centricity has transformed pharma, yet few companies effectively measure the impact of their patient engagement activities, let alone track the shift in their people towards a patient-first mindset,” says the report.

“On the one hand, it is common sense – you do, you measure, you improve. But on the other hand, can your activity be measured? Do the right tools and metrics even exist? And are you measuring the right thing? Measuring can be a tricky business.”

Two years ago, Janssen implemented a dashboard to measure patient engagement in disease and compound strategies and clinical plans.

It’s proven to be “an effective approach to driving change”, says Daniel De Schryver, the company’s patient engagement and advocacy lead in the EMEA region.

“We use our dashboard to measure progress and establish accountability, but we measure whether we engaged with patients, we do not measure the outcomes of the engagement yet.”

Patient outcomes are the ultimate endpoint, he says, but intermediate KPIs are needed to direct the journey.

“The real metric is the long one – better usage of a solution means less waste, more sustainable healthcare and better patient outcomes,” says Daniel.

“But with such a long time between developing a solution and seeing the outcome in the patient population, all the other measurements will be short term.”

None of the featured companies have, as yet, settled on a set of metrics that encompass the multiple perspectives of all stakeholders.

Mathieu Boudes, coordinator of the European Patients’ Forum’s PARADIGM project, says a range would be needed.

He explains: “We need quantitative and qualitative measures. You need to touch both the brain and the heart.

“You change the heart with anecdotes, with stories, with people’s satisfaction, but, at the end of the day, business decisions are made in dollars and euros so you need harder metrics.”

Scaling up efforts

Effective measurement of success may well help alleviate the second biggest barrier to patient centricity identified by the eyeforpharma report: scaling up pilots and centres of excellence into company-wide ways of working.

“As with many aspects of the patient centric transformation of pharma, from the outside, scaling up efforts seems like a no-brainer,” says Trends in Patient Centricity.

“The evidence of the benefit to all parts of the health ecosystems is swelling, external pressure is building, internal experience is growing, so what’s holding companies back?”

Jill Donahue, co-founder of the Aurora Project, says a fundamental barrier was a lack of understanding of patient centricity among those not working directly with it.

“Many think it is expensive programs that belong to one department,” she says, adding they were often seem as luxuries.

“When everything is going well, we can do patient-centric initiatives, but when things get tough, budgets dry up.”

The key is to create a culture shift by connecting “each person in the organisation to the difference they can make for patients”, she adds.

Each company has developed its own way of doing that by ensuring the ethos of patient centricity spreads across the whole organisation.

Through joint working, Novartis has published its “Patient Declaration” and “Our Commitment to Patients and Caregivers” which set out what the patient community can expect from the company.

While many industry players have opted for dedicated engagement staff or departments, Bayer has focused on building patient centricity among the “rank and file”.

This has involved placing engagement champions in every department from early clinical research to marketing. They are all members of an overarching Patient Insights and Engagement network.

Pooja Merchant, Bayer’s head of external medical affairs, says: “Our journey has been slightly different from others because we did not nominate a chief patient officer or establish a specialised function, but rather we took a grassroots approach.

“We call it a movement because it gets everyone, no matter where they are in the company, thinking about what they can do directly to bring in the patient perspective.”

At MSD, European lead of patient innovation Paul Robinson is one of four regional champions who are driving culture change by working with colleagues to advance engagement projects.

“You need champions to bang the drum and hold colleagues’ hands while they do it for the first time. Ultimately, the hope is that you won’t need people like me, and it becomes business as usual because everyone believes it’s the right thing to do, and does it automatically,” he says.

Blueprint for change

There was no blueprint when companies took their first tentative steps a few years ago and there is none now as they enter the next era of patient centricity becoming business as usual, says the report.

But while there is no one-size-fits-all approach to embracing the much-needed culture shift, as Trends in Patient Centricity shows, there are now at least case studies to learn from.

To read the full report, click here.