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After many years of patient-centric efforts, pharma is finally starting to measure its impact

By Hugh Gosling on Dec 11, 2018

Often attributed to management guru Peter Drucker but perhaps coined first by 19th century scientist William Thompson, Lord Kelvin, there is more to this famous quotation than first meets the eye.

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 tools and metrics even exist? And, are you measuring the right things? Measuring can be a tricky business.

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 patients-first mindset.

So, how can we improve unless we measure? Where does this vacuum leave the patient-centric champions scattered across pharma? Does the next iteration of patient-centricity need metrics, or can the industry move forward without them?

In the most recent annual benchmarking survey carried out by the Aurora Project, 42% of respondents said their company measured their patient-centric efforts.

“I expected that number to be far lower,” says author, speaker and Aurora Project founder, Jill Donahue, who is “on a mission to lift pharma”. In her conversations with executives right across the industry, the consensus is that no one had yet worked out all the kinks.

“People tell me that measurement of patient-centricity is the Holy Grail. So, I’m left wondering what the 42% are measuring. Is it enterprise-wide or small-scale?”

Janssen is perhaps typical among forward-looking companies, and is tracking a shift in behavior. “We’re looking to systematize patient engagement across the whole company; disease strategy through post-marketing, we want patient input in all key decision moments,” says Daniel De Schryver, Patient Engagement and Advocacy Lead, EMEA.

Two years ago, at the global level, Janssen implemented a dashboard to measure patient engagement in disease and compound strategies and clinical plans, which has proven to be “an effective approach for driving change.” However, De Schryver admits that it was not easy to develop such full-spectrum measurement, stressing the need for unbiased metrics that are valid for all stakeholders.

What do patients want?
“There are so many aspects of pharma’s operations that would be interesting to look at,” says Mathieu Boudes, PARADIGM Coordinator at the European Patients’ Forum. “Historically, the HIV groups have developed an ecosystem where industry and patient can work efficiently together so, after years of advocacy, the field is almost ready. Now, we need a big effort to nail the final cultural shift, and this will happen by measuring the impact of patient engagement in medicines R&D.”

In fact, pharmaceutical companies owe it to patients to act. “Efficient patient engagement in the development of medicines brings better health outcomes while de-risking their development. But the resource of patients is not endless; we need to focus on how and when patient involvement delivers the greatest impact,” he says.

However, Boudes acknowledges the barriers to overcome. “If we want patient engagement to go mainstream, we need to measure it – but the criteria have not yet been developed. We don’t have the key indicators yet. To bring in the patient perspective at the right moment and at the right level, will need both qualitative and quantitative metrics, but that’s difficult.”

In some ways, measurement of the value of patient engagement is the $64,000 question, says says Paul Robinson, European Lead, Patient Innovation, at MSD (known as Merck in the US and Canada). “Industry is very evidence-based so there are a lot of people who say, I’m not going to change my process unless you’ve got evidence to show it is valuable. Of course, there is an alternative view, that involving patients is the right thing to do because they are the ultimate consumers and their perspective is highly likely to be relevant. What we don’t know yet is whether a combination of gut feeling and commonsense will win, or whether hard, tangible metrics will be necessary. I suspect it will be a combination of both.”

Novartis has been committed to patient engagement even before its much-reported Patient Declaration in 2015. “Patient engagement is as much an art as a science,” says Laura McKeaveney, Head of the company’s Global Patient Advocacy. “Following the medicine’s lifecycle, that’s the science part of it. The art is to superimpose the patient pathway over the medicine life cycle.”

She imagines it as a double helix like DNA, where one strand is the medicine lifecycle and the other the patient pathway. “We have to clearly identify the critical points of intersection and make those points matter, if we are to further improve patient outcomes,” she says.

What McKeaveney and her colleagues have discovered is that it’s not easy. “It isn’t easy because you’re talking about measuring impacts over many years, at least 4 or 5 years on. What we’re playing with now is to look at which key activities lead to long-term impacts, then working out how to build milestones to monitor progress to ensure that we’re on the right path.”

It’s all about outcomes
While all agree that patient outcomes must be the ultimate endpoint, intermediate measures are essential. “The real metric is the long one – better usage of a solution means less waste, more sustainable healthcare and better patient outcomes,” says Janssen’s De Schryver. “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.”

However, the reality is that few companies are even measuring such short-term metrics. “We use our dashboard to measure progress and establish accountability, but we measure whether we engaged with patients; we do not measure outcomes of the engagement yet. Our current approach for measuring the impact of patient engagement is through case examples. As more teams engage directly with patients, the more value they are seeing.”

At Roche Diabetes Care in the US, they measure a number of factors, says Jay Graves, VP of Sales. “Unfortunately, it’s not so much quantitative as qualitative measures. I have a document that guides us through the year and there are places on it specific to the patient, where we see high levels of customer service, responsiveness, advocacy. These are some things that we do measure.”

An external measure for patient engagement could be company reputation, he adds. “A good way to get strong quantifiable numbers would using patient surveys or patient interviews around brand awareness. It’s fairly easy to tack on a question such as “Do you think this organization has the patient in mind?”, and score that. If you come in low then we have to ask, What does our brand mean to people? Are we just another medical company? It would be good to have something that translates your corporate culture to the rep on the ground.”

When it started on the patient-centricity journey, Bayer measured nothing, says Pooja Merchant, Head of External Medical Affairs at Bayer. “We decided not to measure anything yet because the whole purpose was just to do – to get teams to take action. Until we did that, we would never know what worked.”

Now, Merchant is keen to find the right path for Bayer. “I tell people to forget what they hear from the external world – we need to learn by doing it ourselves. With the support of Patient Insights & Engagement (PIE), a cross-functional network, our focus for the last two years has been activation, activation, activation, and supporting teams when they do take action. Now we’re at a stage where we have some good examples that we are proud of, where we’ve partnered and co-created, so we’re trying to capture our learnings.”

What to Measure?
What kind of metrics are they focusing on? “We’re not yet there where we can say because we engaged we increased recruitment or because we engaged we improved patient outcomes. I honestly don’t think anyone is there. It’s such a multifactorial process and so based on building genuine relationships that you cannot directly correlate one action to one outcome. Right now, we’re working on a project basis, where a debrief gets conducted after every project to get feedback on how it went, and what it changed. We’re not there yet where we have standard metrics incorporated in all our processes and we get reports on a monthly basis.”

The picture grows more complex when the entire enterprise may not be the best approach. “The metrics are different for every department,” says Donahue. “For example, in Commercial we need to help sales reps be more focused on patients – what is preventing them from helping more patients and how can we train on that?”

Donahue believes it is helpful to look outside our industry. She points to US-based online shoe and clothing retailer Zappos. “How did they get to be so customer-focused? One way was through changing their incentives,” she says.

When the company’s CEO Tony Hsieh noticed that call center workers were measured by the number of calls they handled per hour, he realized it was at odds with the group’s purpose – to deliver happiness. “He recognized that this reward system was driving haste and brevity instead of connection and joy, so he banished the metric and replaced it with Personal Emotional Connections (PECs), which meant creating a bond outside the conversation about the product,” says Donahue. “Why don’t we, in pharma, replace number of calls per day and sales-based bonus systems with Patient-focused Connections (PFCs)?”

However, any metrics need to encompass multiple perspectives, adds Robinson. “My suspicion is that industry will focus on fewer protocol amendments, better design, faster recruitment, fewer dropouts, faster time to a yes/no decision – these are what industry values but they are also relatively easy to measure. However, including what patient organizations value will be harder – how do you measure a sense of involvement and the value of your input?”

So what metrics do patients value? “I won’t say,” says the EPF’s Boudes. “I will leave that to the 34 members of the PARADIGM consortium. What I can say is that 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. Humanizing the numbers behind the KPIs is key to making patient engagement a greater reality and ensuring that the needle moves from ‘engaging with patients is the right thing to do’ to ‘it is the right thing to do for the pharma business’.” For more information on the IMI PARADIGM initiative, see box (below).

Bayer’s Merchant agrees. “It cannot be just hard metrics, although part of me wishes it could be. I don’t think this can only be measured by how many amendments have been mitigated, because of the emotional component of connecting people and empathy building and motivation. Usually with metrics, there’s a single number or a simple graph but this is not a topic that you can apply a similar concept to. That’s why it’s been so hard to figure out how to measure and what to measure.

“Every person like me in every company who is driving this is genuinely keen to get some way of being able to communicate the value because it will only help expedite and create more activation and get more teams to do it,” she adds.

It is clear that the task of working out how to measure patient-centric efforts has many in pharma and beyond scratching their heads right now. In fact, the nut may be so tough to crack that it ushers in a new era of cross-industry collaboration, as we’re seeing with the IMI PARADIGM project in Europe.

However, considering the difficulty of measuring this activity that has taken over pharma and adding to that the truth that patient engagement activities are relatively inexpensive, perhaps all this effort is ultimately unnecessary.

“Maybe we’re making it too complicated by insisting on hard deliverable metrics, maybe they’re not obtainable,” says MSD’s Robinson.

Sometimes, perhaps, common sense is the best guide in business after all.

 

Box: Changing the PARADIGM together
As with patient engagement itself, collaboration is the order of the day when it comes to measuring its impact.

“There are papers now published about how much money can be saved by engaging with patients, the net value of patient engagement, and many academics are working on it,” says Mathieu Boudes of the European Patients’ Forum. “We also have the DIA and the Clinical Trials Transformation Initiative (CTTI) working on it. Together, we drift towards intelligence.”

In fact, the task of working out how to measure the value of patient-centric projects is not one that pharma should undertake alone. “No single company should tackle this alone” says Novartis’ McKeaveney. “We need more multi-stakeholder approaches to the overall subject and in particular on measurements and impact. Including patient insights at key decision-making points has to become part of the industry’s understanding of how to optimize outcomes – for the patient, company and other stakeholders. We are pleased to be part of several multi-stakeholder alliances, including Patient Focused Medicines Development (PFMD) and we’re very active in the IMI project PARADIGM, where a critical deliverable will be an agreed-upon set of meaningful measurements on patient engagement.”

PARADIGM – Patients Active in Research And Dialogues for an Improved Generation of Medicines – is a public-private partnership co-led by the European Patients’ Forum and the European Federation of Pharmaceutical Industry Associations, EFPIA. It receives funding from the Innovative Medicines Initiative, which itself receives support from the European Union’s Horizon 2020 research and innovation program, and EFPIA.

Its mission is “to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players.” However, a key objective of the initiative is to produce a set of metrics to measure the impact of patient engagement.

Many companies are actively involved, including Janssen “We are looking at measurement, but we don’t want to sit on an island,” says De Schryver. “I really believe that the many brains in PARADIGM can come up with far better approaches than we could alone.”

However, he acknowledges this approach will be slower. “We’re not going to see anything concrete before the end of 2019, longer before anything is published. But because it is a collaborative approach rather than a single group of scientists sitting in a room, it will be broadly based and so widely accepted.”

Work has already begun, says MSD’s Robinson. “At the moment we’re gathering information on what people value then we will try to come up with a set of metrics to measure what they value. We’ll then apply those metrics to a set of cases – we have quite a few examples now where companies have done patient engagement in studies and we know how they went, we know recruitment rates, the number of protocol amendments, dropout rate, etc. That work is going on, but it is early days.”

PARADIGM is indicative of a new era of collaboration, according to McKeaveney. “We haven’t seen this kind of collaboration before – between departments, between companies, between multiple stakeholders in the healthcare ecosystem, and, importantly, with an international liaison group to enable global thinking and participation.

Everyone is trying to figure it all out but the deeper you get into this, the more you realize you have no expertise, that there are so many questions. This is an opportunity for us to improve together and create the ‘paradigm’ shift needed.”

Bayer’s Merchant agrees. “PARADIGM is an opportunity to catalyze progress in patient engagement. The more stakeholders we involve and the more we build upon and connect to existing efforts, the faster we can define a framework that brings value to all stakeholders. Although such cross-sectoral exchange is not easy, it is essential.”

Yet, pharma needs to resist the urge to compete, says Mathieu Boudes. “We’re not going to do it alone but as a community; we see the ability to measure patient engagement as a pre-competitive tool that everybody can use. How you operationalize patient engagement is the responsibility of each organization, but measuring it is something everybody can work on together.”