Turning words into actions with patient engagement

Boehringer Ingelheim’s Carinne Brouillon tells us how the company co-created its recent Global Patient Partnership Summit with patients and how the meeting brought representatives together to design actionable projects for pharma-patient engagement.

As pharma seeks new and better ways to listen to the patient voice – particularly in the context of COVID-19 – it needs actionable goals, co-created with patients, for how it can improve its engagement efforts.

That was the philosophy behind Boehringer Ingelheim’s recent Global Patient Partnership Summit, according to the company’s head of Human Pharma Carinne Brouillon.

Brouillon says that the summit was the natural next step for a company that has continuously ramped up its patient engagement efforts over the last few years.

This has included running ad boards in connection with patient groups in order to understand the patient perspective on specific therapy areas.

“That’s been a positive relationship that has helped us develop programmes on everything from access to medicines and understanding diseases, to developing medical information leaflets for patients,” says Brouillon. “We want to differentiate ourselves by the inclusion of patients in as many different activities along the development and the commercialisation pathway as possible.”

The idea for the Global Patient Partnership Summit came about after the company spotted common themes across all these activities in terms of what patients were saying was important to them. These included raising awareness, access to care, collaboration and innovation, and digital.

The goal was to provide a platform for a global patient organisation and a meeting of groups who may have never met.

Boehringer Ingelheim worked with a patient representative steering committee to co-create an agenda for the Summit that reflected what the attendees wanted to discuss and the challenges they faced. Brouillon says that the company wanted to take a “listening” role to hear the patient voice directly.

“In the past – for example with the ad boards – we’ve often been focused on the questions that were relevant to us as a company, or only relevant to one specific group of patients,” she says.

“The idea here was instead to look at common themes and to come up with actionable goals for how Boehringer Ingelheim and the industry can help patients.”

She says there were several topics Boehringer Ingelheim might not have covered in such an event if it weren’t for patient input.

“If it hadn’t been for the co-creation element, we would probably have spent more time on outcomes that make sense for patients in clinical trials and other aspects that are more useful for us as a company, rather than discussing how to navigate diseases and diagnosis, what the next steps after a diagnosis might be, what having a particular disease means, etc.

“That patient lens has been really important in helping us to define that understanding of how people actually experience disease. As a company we obviously have a strong medical understanding of diseases, but actually navigating a condition when you live with it is an entirely different situation.”

The winning projects

The original plan was for the summit to take place in the company’s hometown of Ingelheim, but the COVID-19 pandemic meant it instead took place online.

In the end, more than 500 people attended, including 270 patient representatives from 50 countries.

“The enthusiasm of everyone involved was unbelievable,” says Brouillon. “It was so humbling to feel that energy and see everyone coming at it with a proactive mindset.”

Forty-eight different workshops took place over the two days, with participants eventually agreeing on eight ‘winning’ project proposals to be pursued further with project teams. Representatives will also work with the steering committee to identify the next steps from the outcomes of the event as part of a report.

Some of the winning projects included:

  • The creation of a navigator programme for remote clinical trials, to provide a best-practice toolkit which can be implemented across different disease areas and geographical regions. It was identified that making participation in trials as convenient as possible would lower the likelihood of geographical bias and encourage a more diverse participant group.
  • Through multi-stakeholder development across, the creation of disease-specific roadmaps to help guide patients through their interactions with the healthcare system. The project will begin as pilots in a small number of disease areas and by geographical area. Learnings will then be taken by the case study projects and adaptations made to further improve the delivery for patients.
  • Exploring the use and testing of digital solutions with patient representatives right from the start, so that the patient voice is actively included in all stages of development. The end result being a solution which has already been identified as a viable benefit for the patient in managing their condition or treatment.
  • Providing solutions for patient organisations to be able to engage and maintain a relationship of open dialogues with their stakeholders, in order to break down barriers and identify new approaches to collaboration. Solutions will focus on supporting both parties by creating a framework to follow as plans of what they hope to achieve are developed.

Brouillon says her goal now is to take that energy and momentum and continue to reinforce patient engagement within Boehringer Ingelheim, whilst also ensuring these projects can continue helping patients.

“We want this to be a long-term effort,” she adds. “A key part of the summit was helping us create more relationships with patient organisations, and it’s important that we maintain continuity with these connections and make sure that all these activities are not just one-shots

“Now the goal is to continue the dialogue around what patients need and make sure we put extra effort into listening to each other and discussing how we can collaborate further.”

Brouillon also hopes that the insights from the Summit will help Boehringer Ingelheim to “meet the patient where they are”.

“We are an innovative therapies company and we want our innovation to meet the right patients at the right place. The more we understand how patients navigate diseases, the better we will be able to do that.

“For example, although we already have a strong presence in digital, it’s important that we work with patient organisations to find the best ways to help them actually use these tools, and learn how we can gather data that will really help understand their disease. We have to make sure these technologies are actually properly designed for how patients want to use them.”

She adds that the company is planning to run another summit in a couple of years’ time.

“We do want to make sure we’re not doing the event too often, because we need time to get the projects off the ground and assess how they’re doing.”

Meanwhile, Brouillon wants to make sure the company continues with its other patient engagement efforts.

“Last year we ran 26 patient ad boards, and this year we’ll hopefully run at least that many again. We also want to make sure that all our development programmes include the patient voice so that we are not missing any important points of view.

“We’ve learned a lot from actually talking to patients like this – just spending time with them, asking about their disease, and finding out what the pain points are.

“Best practice for patient engagement is not rocket science. It’s really just about talking to each other.”

About the interviewee

Carinne Brouillon

Carinne Brouillon is a member of the Board of Managing Directors at Boehringer Ingelheim with responsibility for the Human Pharma Business. During a 20-year career with Johnson & Johnson, Carinne held various positions of increasing responsibility in sales, marketing and general management. In her following role as president of Janssen Therapeutics Carinne had responsibility for the US commercial Infectious Diseases business. She was then global commercial strategy leader at Janssen. Carinne joined Boehringer Ingelheim in 2018 as head of Global Therapeutic Areas.

About the author


George Underwood is the editor for pharmaphorum’s Deep Dive digital magazine. He has been reporting on the pharma industry since 2014 and has worked at a number of leading publications in the UK.

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