By Scott Dille | Published September 2017
In the pharmaceutical industry, working with the end customer is easier said than done. Nevertheless, Research and Development (R&D) teams across Novo Nordisk have now started partnering with patient leaders through a specialised unit within Novo Nordisk R&D. The unit works to better understand what truly matters, and ‘what great looks like’, from a healthcare consumer (aka ‘patient’) perspective.
”We have, for example, expanded our understanding of the fact that there is no such thing as ‘one size fits all’,“ says Camilla Krogh Lauritzen, director of R&D Communication and Patient Partnering at Novo Nordisk. ”People living with diabetes, whether it's type 1, 1.5 or 2, have unique perspectives on their experience, and we cannot capture the multifaceted aspects if we are not having a conversation with them directly.”
Camilla continues: “Patient leaders are in a unique position to capture as well as share the many nuances of a disease area, allowing us to draw key overall conclusions, which can then be further uncovered and validated by surveying a particular group, for example.”
The partnering unit is currently drilling into one of the key conclusions, namely that people with type 1 diabetes want treatments that reduce their daily awareness of living with diabetes.
“It is clear that irrespective of who you are, being afflicted with type 1 diabetes takes up mental bandwidth 24/7,” says Camilla. “This matches another key conclusion – that the implied psychological burden of type 1 diabetes is in fact considered bigger than any physical downside of being afflicted by this disease.”
As is the case with any research and development, finding out what this means for the design of future products is critically important.
“From past experience, I know that it is key to capture and internalise insights and advice from patient leaders into R&D if one wants to be ahead of the curve and the competition.”
In 2014, a group of Novo Nordisk colleagues led by Camilla set out to prove the concept of ‘patient partnering in medicines R&D’ and break the traditional flow by bringing the patient from the end of the pharmaceutical pipeline to the beginning. It was the start of a new partnership model at Novo Nordisk and an opportunity to learn from patient leaders representing hundreds to thousands of people affected by diabetes, obesity and other serious chronic conditions.
“At first, people told me that building such a partnership with patient leaders couldn’t be done,” says Camilla. “In addition, there were no specific guidelines, procedures or contracts in place in Novo Nordisk enabling the set-up of this kind of partnership model, and some thought it was unclear how it would benefit our research and development.”
The six-month pilot project brought together 13 patient leaders – disease experience experts – representing people living with type 1 diabetes, diabetes complications, obesity and adult growth hormone deficiency. It demonstrated the win-win value of working together – from the perspective of both researchers and patient leaders.
“At the end of the pilot project, it was clear to everyone involved that this was just the beginning of something mutually valuable. ‘Can’t be done’ had become ‘let’s do this’, for both the researchers and disease experience experts involved,” Camilla says. “After the last meeting of the pilot project, one of the disease experience experts, Tanner Barton, said that if we were ever looking to do something more systematic, for real, he would be interested in being involved.”
Two months later in August 2015, when the R&D Patient Partnering
unit was formally established, Tanner became the first member of what
is now known as DEEPs – Disease Experience Expert Panels.
Today, DEEPs are being recruited across six therapy areas – type 1 and 2 diabetes, obesity, haemophilia, growth hormone deficiency and diabetes complications. Each panel is to be comprised of five to eight disease experience experts who are patients themselves and are also global, regional or national patient organisation leaders: essentially people who represent and can speak on behalf of their patient community.
After only a few meetings, the DEEP partnerships have so far provided Novo Nordisk’s product development teams with a better understanding of how to include the experiences of people living with chronic conditions in eg treatment development and trial design.
Novo Nordisk’s Chief Medical Officer, Alan Moses, has been involved with patient partnering and the DEEPs from the beginning. His experience on the panels underlines his belief that insights into the ‘non-obvious’ elements of living with a disease can provide new approaches to designing a clinical trial2 , developing a device, or gathering specific information from patient interactions that might otherwise have been missed.
“Perhaps the most important learning from the DEEP experience is how valuable the patient perspective can be across the entire development process,” says Alan. “When scientists have an opportunity to interact with disease experts who are very knowledgeable about drug development, the opportunities can be almost unlimited.”
These insights are especially true for people with chronic conditions, like diabetes, haemophilia and obesity.
“Chronic diseases often impose a unique burden on the person living with the condition and the family because of their life-long implications,” Alan says. “Gaining insights into the ‘pain’ points that a chronic disease imposes on a patient, family or workplace requires a level of understanding that is diminished by not having their voice available.”
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