How To Trust In The Age Of (Dis)Information
Amid the smoke and mirrors, pharma has an opportunity to set the record straight.
We’ve never had more information available to us, and that trajectory is only going one way. But the flipside of the digital revolution has produced bots, disinformation campaigns and the mighty spectre of fake news.
Within the new normal of information overload, and where empowered patients demand quality content, which speaks directly to them and their needs, it’s more important than ever for pharma to try and cut through the noise.
Where Google is the first doctor many speak to, pharma has the opportunity to become an online authority on medications, treatments and conditions. If this is a key part of pharma’s evolution into providing more than just the medicine, how can companies ensure their messages are viewed as genuine?
Companies invest millions of dollars in information campaigns, seeking to become the final word on healthcare topics related to their field. Yet pharma doesn’t have a golden reputation to lend credence to its content. Marred by a historic lack of transparency and headline-grabbing price hikes and scandals, many people eye the industry with a healthy dose of scepticism.
“That distrust will always be there, but we are getting closer to the understanding of doing things in the right way, for the right reason, with the right people, and through that we are gaining increasing trust,” says Camilla Krogh Lauritzen, Chief Patient Officer, Rare Diseases at LEO Pharma.
“On the other hand, trying to communicate disease burdens or even down to the level of explaining to patients how they should be managing their disease – that's not what we should be doing, because we have – and are seen as having – invested interests, and also we are not disease experience experts – they are. We should be asking how we can help others in more suitable positions to communicate this.
“There are things we are really good at doing, and then there are things others are better at. It comes down to a conversation around the future pharma company. What is expected of us and what should we allow others, such as the patient community, to do instead?”
Strength in numbers
For Debra McGarity, Director Patient Advocacy at Ipsen US, it’s about building on what has already been achieved. “I would argue that we are already a trusted source of information because we're such a key strategic player. It’s how to expand or deepen that reputation, and I think a lot of it stems from the work that we do with our partner organizations.
“We want to go beyond being seen as a transactional partner and move to true partnership. The nexus of the conversation lies here, because it's within that deep partnership space that you can really understand what your partner organizations need and where you can see those intersections of engagement.”
Both speak to the same thing – that the route to becoming a trusted source of information involves empowering experts in the field, be that medical professionals or people with lived experience, to represent pharma’s voice.
“The basic fact of psychology is that people will go to people in the same situation as them for information, and they will trust that,” says Krogh Lauritzen. “We are here to translate unmet medical needs into solutions. In LEO we are a world leader in dermatology and we work to alleviate these problems from the world spectrum – this is our raison d’etre.
“On the other hand, trying to communicate disease burdens or even down to the level of explaining to patients how they should be managing their disease – that's not what we should be doing, because we have – and are seen as having – invested interests, and also we are not disease experience experts – they are. We should be asking how we can help others in more suitable positions to communicate this.”
Understanding the needs of patients is closely tied to delivering an authentic flow of information, says McGarity. “A great way to move forward is through our patients, because we're engaging our patients to be our voice. It's that peer-to-peer collaboration where the dialogue exchange happens, and it’s always more comfortable for a patient to hear from somebody who is going through his or her similar journey.”
Instead of trying to strong-arm customers into believing pharma has their best interests at heart, if patients champion messaging, the dialogue becomes inherently more trustworthy.
“Communications have historically always been pharma driven and launched,” says Krogh Lauritzen. “You see millions of dollars invested in adherence programmes, including community posters, brochures, pamphlets, digital solutions, but I’d give you an award if you can find me one company who can demonstrate that these have had a significant impact, if it wasn’t developed, from scratch, with patients.”
Putting the I in patient
As such, Ipsen now works “with patients, for patients,” says McGarity. “We have a dedicated Global function looking to engage the patient from beginning to end and it's not just about products anymore but how we take care of the patient as a whole.” One example of this comes from working alongside patients on very early social media engagement. “We all turn to Google when we have a diagnosis to see what it means, so we leverage our patients so that we can better engage in that space.”
This mentality moves beyond setting the communication agenda too, as recruiting experts throughout the value chain further engenders trust. “For me there are three types of experts that are absolutely essential in medical R&D,” says Krogh Lauritzen. “There are the physicians, or medical experts, scientific experts; my R&D peers within and outside of the company; and then the disease experience experts —the patients.
“This is the future of pharma, where disease experience experts are part of the research priority setting, even before there’s a molecule. They are the ones inventing the communication and when they speak to their peers they can say, ‘This is us, so you can trust it.’
“That's not the same as saying that our communication is trusted. It will never be, because we are pharma, but we’ve done the best we can to include patient partners from the get-go and until the information is on the website.”
One current programme has seen Ipsen link with other partners and The Healing NET Foundation, a narrow endocrine tumour organisation, to enhance communication between physicians and patients. “We’ve worked with group members to develop tools to help patients when engaging with their doctors,” says McGarity. This includes online features on the top 10 questions to ask your endocrinologist, or GP. “It’s a long path to diagnosis with NETs so that’s one area where we’ve seen really great engagement.”
In addition to collaboratively producing materials, trust is more slowly built up by background partnerships. “We want to be the pancreatic cancer company,” McGarity adds. “So we try to look at things very intentionally and creatively. One of the things we do are leadership exchange meetings, where, say, we host at Ipsen headquarters two of our key strategic partners in the pancreatic cancer space. Its leadership spends face-to-face time with Ipsen’s to foster a deeper dialogue, a deeper partnership.”
Measuring success can prove difficult, with no obvious metrics to work with. “In the world of patient advocacy, it can be very challenging when it comes to statistics. One of the metrics that we use is how many touchpoints we’ve had with our groups, how many partnership engagements we’ve supported, or how many times an organization has reached out.”
Together these touchpoints represent the cohesive efforts to build bridges with the stakeholders who matter. “It comes down to these meaningful collaborations that we're building with our partners,” says McGarity. “Yes, there has to be some financial component to every partnership, but I really want to see beyond the products. We want to be a partner in our patients' care journey, and our patients are demanding it, because they are educated, informed and engaged. We want to be that differentiator.”
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