Pharma & Patient Summit USA Virtual

Dec 1, 2020 - Dec 4, 2020, Digital Conference, Networking & Exhibition

The number one event in North America where patient-centric leaders formulate strategy

How should pharma approach patient collaboration in the 2020s?


Deeper, more holistic, strategic and ‘patient directed’ engagement will be a win for all this coming decade



From the growing range of patient entities through to new possibilities stemming from technology and patient-generated data, pharma has more and more ways to innovate when it comes to collaborating with patients. 

 
Now pharma needs to identify the ones that will really move the dial. “Clearly there is a shift from patient engagement as a nice-to-have, feel-good activity, to something which is more strategic,” says Vanessa Pott, Director, Patient Advocacy & Strategic Partnerships at Merck. “It’s really important for us to stay abreast of all the external trends.” 
 
To stay ahead of the curve in the coming years, pharma will need to address these trends. “This includes everything from appreciating the nuances of the vast diversity within patient communities, through to developing consistent and compliant approaches to collaboration,” says Dr. Amy Nicole Nayar, Head of Global Patient Relations at AbbVie. “The companies that learn how to harness this opportunity quickly, and the patients they serve, will benefit most.”
 
Building strategic partnerships over transactional relationships
The nature of these partnerships is already changing, says Pott. “Our main goal is to strategically engage with patients and make sure that the insights we get actually shape our decision-making, so that we’re not just being patient-centric for patient-centricity’s sake. It’s moving from transactional relationships to long-term strategic partnerships.”
 


Merck now strives towards being a ‘patient-directed company,’ a subtle but important semantic distinction. Nayar frames the shift in AbbVie’s patient interactions in a similar way. “We used to talk about what we do for patients, and now we are talking about what we do with patients,’” she says.  “That small change in language helps drive the desired change in our internal ways of working. It also resonates more with patient communities.”
 

This more nuanced approach is also reflected in the growing sense within pharma that patients can no longer be thought of as a single entity. “The type of patient input that we need directs the type of patient we engage.” says, Nayar. “It might be more appropriate for us to work with patient experts trained in R&D, or patient advocacy organization leaders who provide input to HTA bodies, or individual patients, or an online patient community leader. The key is that we are clear on the input we need, and we engage the patients who are able to provide that input appropriately.”
 
With each grouping bringing its own expertise, engaging communities on tasks appropriate to their experience matters. This first requires building knowledge of their interests and mission, as well as the level of expertise required for the particular pharma program. “It’s important to know exactly what you want to achieve first and then map out the right stakeholders that need to be involved in that process,” says Pott. “We also have to be flexible – we can't apply the same ways of engaging to all groups.”
 
Pharma also needs to offer patient groups clarity of purpose, says Durhane Wong-Rieger, President of the Canadian Organization for Rare Disorders, which represents the interests of more than 100 patient group members. “We need to be really clear what we’re collaborating on,” she says. “What’s your role? What are my interests? We first and foremost need to be assured that any collaboration is directed by and based on what we feel is in the best interests of our patients.”

 
Universal buy-in and consistency 
When it comes to driving best practices internally, getting everyone on side helps with providing consistent approaches to patient engagement, says Pott, whose team was set up in 2016 as a centre of excellence maintaining relationships with patient organisations and acting as a resource across Merck’s global and local teams.
 
“The fact that our team even exists is proof of the buy-in that we have from senior leadership,” she says. “What's really important for us is to continue focusing on consistent approaches all across the organisation. It’s really key that a patient who interacts with a Merck representative in China can expect the same engagement level as somebody who’s directly working with our global R&D in our global headquarters.”
 
Conceptual buy-in may be easy, but achieving consistency takes work. “Team by team, to drive meaningful change we must appeal to colleagues’ sense of purpose, while making a strong business case for patient involvement,” says Nayar. This includes highlighting her favoured metrics on Patient-Centric Trials from The Economist Intelligence Unit (https://druginnovation.eiu.com/patient-centric-trials/), which show that drugs developed using patient-centric designs were nearly 20% more likely to be launched compared to drugs developed without, while also taking less time to recruit trial participants. 
 
When it comes to consistency on the patient side, pharma has work to do when it comes to company takeovers and sub-contracting clinical trial management. These matter because they are times when hard-earned patient relationships can be lost, says Wong-Rieger. “It’s about being sensitive to the fact that you've worked with the community and if another company takes over or buys the product, they need to have the kind of contact that the patients have been used to, so we don't lose this relationship with the community.”
 
Self-regulation and compliance 
There is a further advantage to setting solid internal processes in place now as it is also a good way to future-proof the organisation against regulatory changes that look likely to happen. “The external environment is going to become more demanding when it comes to patient engagement,” says Pott.
 
“The FDA is issuing guidance around patient-reported outcomes, but I think it will become more of a requirement in the future, so we’re looking to be as advanced as we can with our internal procedures. We're constantly asking what the standards are that we need to be adhering to, even if they're self-proclaimed and not mandated by regulators.” 
 
Such self-regulation builds frameworks within which teams feel confident to execute patient engagement activities, says Pott. It also sits hand in hand with guidelines being drawn up by external organisations such as Patient Focused Medicines Development (PFMD), which bring together a wide range of stakeholders to develop quality criteria for patient engagement. 
 
“It's great that there are third party platforms like that where innovative companies like ours can be involved,” says Pott. “It’s not just us cooking something up at the industry association level, it’s really in partnership with the people concerned, which is only going to strengthen us for future regulation in this field.” 
 
Engaging patients early 
At the heart of future patient collaboration ultimately sits a holistic process directing engagement throughout the lifecycle, from early stage development and intersecting with different sectors of the organisation. 
 
“It's identifying all along, in terms of a medicine development chain, where the opportunities for the engagement are,” says Wong-Rieger. “I think many more companies are bringing in patients early on to talk about unmet needs and possible solutions.”
 
By engaging patients before even establishing a programme, pharma can gather valuable information early, says Pott. It can also mitigate against controversies like the recent Novartis gene-therapy lottery scheme, says Wong-Rieger, in which the firm announced it would give away 100 doses of its new drug for children with spinal muscular atrophy (SMA). 
 

“The whole positioning of it was awful,” she says. “It was the best of intentions but made it sound like they were playing games with people's lives. I said, ‘You should have worked with us to help us position this.’ Have the patients on side as partners from the beginning, with you announcing it, understanding it and promoting it with you.”
 

Success will come when patient collaboration is second nature, says Nayar. “It will be something that people who are designing a trial or preparing for a regulatory filing will do – just as inherent as engaging HCP opinion leaders before preparing to launch a product. Engaging patients will become routine.” 
 

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Pharma & Patient Summit USA Virtual

Dec 1, 2020 - Dec 4, 2020, Digital Conference, Networking & Exhibition

The number one event in North America where patient-centric leaders formulate strategy

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