The Aurora Project: Advancing the Patient-Focused Movement

For the first time, founding members open up The Aurora Project to the public.

With a passion to advance health outcomes and improve pharma’s reputation, Paul Simms, Chairman of eyeforpharma, and Jill Donahue, Author of EngageRx, have created The Aurora Project, a volunteer group designed to bring the industry together to focus on patient centricity within the industry. 

“We have the privilege of being able to see many different companies. We saw that there are all these little wheels [patient-focused initiatives] being created around the world; and if we can get together, we can create bigger wheels and move faster in our efforts towards patient centricity,” explained Donahue in a recent webinar that was open to the public.

The Aurora Project’s organic beginnings

How can we manage what we cannot measure? This was a key question for Donahue and Simms when discussing patient focus with each other at the eyeforpharma Barcelona conference last year. Without the proper data, moving from patient-focused intentions towards actions will continue to be a vague endeavor that will not provide the step improvement in trust and attitude that is required.

So, the duo conducted the Global Benchmarking Survey, which included over 2300 participants from 84 countries. One of the key insights was that 86% of participants ranked the importance of delivering on patient-focused missions as greater than 8 out of 10, but only 21% ranked their confidence in their own company delivering on these missions. As Donahue reveals, "We all see there is a gap [in how to be more patient-focused]. We are all really keen to fix it."

The survey closed in March 2016, but interest in the potential of what could be done with the survey findings was overwhelming. A change of name was in order, and thus, “The Aurora Project” was born.

“Aurora” means “the dawn” or “a radiant emission in the form of luminous bands,” which symbolizes what the project is all about - illuminating pharma’s path to patient centricity. “This is about compassion; it’s not complicated, but there’s a lot of people who remain unconvinced," says Simms. The founders hope that members can collectively infuse light and positive energy around patient-focused activities so that those apathetic towards the movement will eventually step out of the shadows.

Opening up to a wider audience

Donahue and Simms initially expected to get a few dozen responses to their request for volunteers to take the work of the survey forward, but the count soon rose to more than 800. The project was then launched to a select group of people outside the initial founding members, primarily those who showed tremendous interest during the survey in advancing patient focus.

The founders recognize that the success of the project lies in the ability of members to volunteer ideas, work together, and mobilize initiatives. During the webinar, for instance, they opened the floor to audience members to crowdsource ideas that could help streamline the purpose statement of the project. Their working purpose is:

For motivated pharma professionals who want to enhance the pharmaceutical industry’s patient-focused practices, our group is a place where we can learn from each other, share ideas and formulate best practices to inspire creative change for pharma that will result in better health in the world.

The overarching goal is to change the nature of discussions around patient focus and to lift pharma’s reputation in the process – a feat requiring the participation of a varied group of industry stakeholders. Indeed, one of the webinar panelists, Jack Whelan, who after being diagnosed with a rare type of cancer became involved in patient advocacy, shared that life science companies have been perceived as profiteers with no compassion, but “these are some of the best and brightest of our people. They are really fundamentally compassionate and generally incorruptible, and it’s a shame that a very small minority of bad behavior can affect this whole industry.”

Getting involved

How do people become part of The Aurora Project? "This is not a membership organization. This is a group of activists," reminds Simms. The application process has been set high to ensure that every member is sincere, active, and doing their part in advancing the patient-focused movement.

The application procedure begins by joining the Linkedin group “The Aurora Project,” and then emailing a “How? Why? What?” manifesto to either of the two founders. In the manifesto, the applicant explains in 300-500 words why they are interested in illuminating the path to patient-centricity, how they have been doing this already, and what goals they feel the group could achieve. 

Retaining membership, however, depends on how active a member is. “The bar will be set high because we are looking for doers and leaders, not lurkers or coasters,” says Simms.

What to expect

The project has lined up several initiatives to get the ball rolling. In the webinar, some ideas that were still at their preliminary stages were shared. These included defining patient centricity, publishing individual experiences and achievements, coming up with a practical guide, putting together a treaty, and promoting a #whypharma campaign (where pharma professionals explain on video why they got into, or stay in, the industry).

Having a platform to share individual company achievements is important to broadcast ideas and inspire others to take patient focus as a tool for compassion and sustainability. According to Simms, “I’ve often found when talking to people, they don’t consider their [patient-focused] efforts to be competitive. They don’t see it as a differentiator used for commercial gain.”

Additionally, pharma has no public set of rules around patient focus. “When it comes from an individual company, it doesn’t look very authentic. It looks like a piece of corporate marketing,” says Simms. “What we really require here is something cross-industry." Designing a multi-company treaty or a signed declaration of commitment to patient focus must be co-created with patients.

Some of these initiatives are scheduled for July to December of 2017. In the meantime, members can stay active by contributing in the “ideas documents” found in a dedicated Google drive folder. Soon, members will discuss funding. As a non-profit, however, the founders emphasize that the importance of people sharing their time and energy, working together, and deciding in a democratic process. Donahue urges members and applicants, "When you give with a good intention behind it, you receive in ways you never knew you would.”