Scaling patient engagement for deeper insights and better outcomes
Scaling patient engagement offers a cascade of benefits if only pharma can gather the right insights
There are plenty of reasons to scale patient engagement. It drives a more patient-centric approach, can help create new services and enable better access and approval with payers and regulators.
But perhaps the simplest and most compelling reason for scaling engagement is its link to stronger outcomes, which has a cascade of business benefits.
“We should be doing this to get to better outcomes and that will also create a better commercial performance, because you will be in an environment where there is more money for innovation and you will be there with solutions that have a high outcome, so they will also have a high return,” says Daniel De Schryver, Patient Engagement and Advocacy Lead, EMEA, Janssen.
“We need a mental shift where everybody understands that there was a way of doing business and we need to change it, for health economics, for outcomes, for commercial and societal reasons.”
Barriers to change
A number of barriers to adopting or scaling patient engagement within organisations remain, including a limited awareness of the potential, entrenched cultures, lack of senior level buy-in or capabilities and challenges around regulatory and ethical frameworks.
Ensuring that people believe in the power of patient insights to lead to better outcomes will generate the enthusiasm needed to make changes, says Oliver Gassner, Head, Digital Health Intelligence, EMEA, Bayer.
“As a project manager, you’re faced with a decision of where to invest your budget,” he says. “In order to invest it upfront in patient insight generation, you have to really believe in it. Making people confident that they will have better success than if they don’t involve patients is a key factor.
“We’ve seen that once these initial hurdles – like senior management buy-in and ethical concerns – have been cleared, it’s really how to help people execute. In our experience what has worked is to help willing colleagues actually do it by bringing on board a dedicated set of resources.”
Involving patients from the outset
Seeking deeper patient insights means making patients and patient bodies into trusted partners, accepting they are often specialists in their field, such as coach and author Teresa Ferreiro.
After developing breast cancer, she became a passionate patient advocate, writing a book for people looking for direction after diagnosis, and winning the eyeforpharma European Patient Champion Award.
“The new mindset we are seeing is understanding that patients want to lead and be involved and build that partnership with their healthcare professional (HCP),” she says. “They are not passive.”
Effectively involving patients starts from the clinical stage and runs throughout commercialisation, says Desiree Priestley, Director, Patient Support Strategy & Insights, Otsuka. “It’s about understanding the problem that we’re trying to solve from the get-go. At Otsuka we map that patient journey, the HCP journey and then validate our assumptions with patients.
“From that we adjust the journey map, align on the problems we’re going to solve as an organisation, which allows for that buy-in from top down and then we find the solutions for the gaps along the way. That way we’re not just plugging in something that potentially already exists, but we’re truly solving for the patient.”
Different products and services invite different levels of engagement, with some lending themselves especially well to collaborative workflows, says Gassner. “If you think of the nature of drugs, those are molecules, so it’s hard to co-design them [but] you can co-design things around them, like trial protocols or programs. When it comes to digital services, or therapeutics, where the mode of action is behaviour change, I don’t think it’s even optional to involve patients early on, it’s imperative.”
The science of behavioural change
Health psychology and behaviour change theory form the backbone of successful patient engagement for Clare Moloney, Programme Insights & Design Lead at IQVIA.
She applies a theoretical frameworks from both areas to help understand and influence health-related behaviours, such as attending appointments through to emotional responses and thoughts around illness. “We try and not only gain insight but also understand why something has an impact and what that means in terms of patient outcomes,” says Moloney.
Three categories which can affect behaviour are assessed – capability, opportunity and motivation, as part of a ‘COM-B’ framework:
• Capability can include problems relating to knowledge levels or abilities around planning or physical capability, such as having to self-administer injections if you have difficulty with fine motor skills.
• Opportunity takes in the landscape around an individual, including fears of healthcare systems, current levels of support and the impact of stigma or cultural norms.
• Motivation addresses issues of patient confidence, their beliefs around treatments and how this impacts upon day-to-day disease management.
“The framework allows us to take all of those greater insights,” says Moloney “and start to think, ‘What does that mean when we’re wanting to build out support?’”
Evidence gathered is used to address the challenges brought up, ranging from training or self-monitoring to helping someone recognise and reframe unhelpful thought patterns. “It’s about not only using science and academic methods to get our insights, but also using that science to change that situation for the better for the patient, family or HCP,” says Moloney.
“It’s about considering patients or HCPs as equal partners during the development process. There’s a definite opportunity for a lot more co-creation, so we’re not repeating the same kind of services.”
Listening to unpopular opinions
Truly taking patient insights on board and treating patients as equal partners can lead to tough conversations as feedback may not always be positive. “When we talk about patients we need to bear in mind that they have a lot to say and sometimes take decisions and say, ‘This product is not for us,’ even if it’s a great solution for the pharma company,” says Ferreiro.
This means firms need to be willing to accept a change of direction or hypothesis after speaking with patients, says Gassner. “Somewhere in the organisation we had a project that was going to do a chatbot and patients said, ‘We don’t want one, it’s just not helping us.’ That was tough for the project team to swallow – they’d had to fight for the budget and had leadership expectations.”
“There does sometimes have to be an acceptance that if we’re helping with shared decision-making, with empowerment, for patients to be active within their healthcare system, sometimes those decisions aren’t going to necessarily go the way of the pharma company,” adds Moloney. “The counter balance to that, is that the service and product will be a better experience for those that it is right for and that joint decisiob is likely to fuel better outcomes.”
Stronger patient outcomes
Because designing products and services that are neither of benefit or use to customers is ultimately a fool’s mission, as well as bad for business. “If you are coming up with a solution that nobody is going to want, the return on investment is going to be weak,” says De Schryver.
“Any solutions will always cost a lot of money, so creating them together with patients at least ensures that what comes out will have a usage and outcome. We’re going towards outcome-based healthcare, so it’s an obvious thing to do.”
Assessments at Janssen have demonstrated the money that can be spared in R&D if you engage with patients and co-design clinical trials. “You have an enormous reduction in amendments and higher recruitment, so if you just take that type of business result internally, it allows you to invest the same amount of money in much more research,” says De Schryver. “Engaging with patients early will bring you a higher return.”
Keeping the patient front and centre, therefore, can only be good for outcomes. For a quick win when starting to make changes, Moloney has a simple suggestion for a person-centred approach based out of her behaviour change model.
“To try and make one change in the way you’re looking at insights and tackling the problem, give yourself three teams. Have a team that looks at capability – how are we going to train and educate? Have part of that team look at how can we influence opportunity – what’s the HCP doing, what’s their access like? And give a team motivation – what’s happening around the patient? That’s a quick way to start to shift thinking when you’re doing not only your insights, but also your service design.”
True patient-centricity involves patients throughout the process, says Priestley. “This ensures that we’re delivering solutions to them ultimately that will lead to better outcomes. I think all the other elements are the cherry on top. If we keep our eye on the patient and what they actually need, that’s where all the great outcomes happen.”