Becoming the #1 Partner to Patient Groups

Focus on improving patient outcomes – not your reputation – to create win-win partnerships with patient organizations

“We don’t partner with patient groups to have a good reputation,” says Amy Nicole Nayar, Head of Global Patient Relations at Abbvie. “If you want to partner with patient groups to improve your reputation, you will miss the mark.” 

An authentic intention to improve patient outcomes is the key factor to success. 

We all want to be patient-centric, says Nayar. “There’s a reason why we all come to this industry,” she says.

For her, it’s personal – she grew up with a brother who had epilepsy and received an innovative treatment. Although it didn’t change the severity or number of his seizures, the difference in adverse effects, and therefore his quality of life, was remarkable. It meant he was alert – he could focus on and retain school lessons.

A decision-maker who looked only at the clinical measures would have missed the profound difference this treatment made to her brother’s life trajectory. He went from someone who could have ended up on social welfare to someone who is independent and contributing to society.

We can’t silo the value of these medicines, she believes. We must advocate for the patient voice to shape healthcare access decisions. As a result, Nayar has dedicated her life to making sure the patient voice is heard so that more people like her brother receive the right treatment at the right time. 

I interviewed Amy Nicole Nayar at eyeforpharma Barcelona earlier this year. You can watch the 10-minute video here: 

In the interview, we covered a lot of ground, including:

Spreading the power of purpose
While Nayar has the power of purpose behind her work, how does she spread this attitude to others? She suggests asking each person to reconnect with why they are here, to take time out of the busyness of life and focus on the authenticity and humanity of our work. 

Connecting with patients
A powerful way to reconnect is through contact with patients, realizing exactly how their lives are impacted.  “But I’m not allowed to connect with patients.” people will counter. Yes, there are regulations, says Nayar, but if you seek an appropriate way, you will find one.

Patients want to talk with us. They want to say thank you. They want to tell us what they need. “Unless we find a way, we will always fall short of our potential,” she proclaims confidently. 

Creating partnerships with patient groups
Patient groups can tell right away if you’re authentic. They have a lot of experience with pharma people and if you’re there to help make a change, they will recognize that.

Be transparent. Be driven from a pure place. Treat them with respect. If you don’t know where a project will go in the future, share that. Treat them as a partner. The more fair and honest you are, the more they want to partner with you.

“Let’s start with our language,” says Nayar. “The terms ‘patient engagement’ and ‘patient activation’ are from our perspective; rather, let’s talk about partnering to truly understand patients’ experiences and preferences, and where we can assist to improve patient outcomes.” 

Is patient centricity about programs or about culture and DNA? 
Patient-centricity is everyone’s job; every single person, from the lab to manufacturing needs to connect with the patient. Find a way, and when you do, you’ll come back and do a better job because you will be energized to help. Patient-centricity must be pervasive. 

The patient-centricity project
We have recently released the results of the second annual Global Patient-Centricity Benchmark Survey, conducted by The Aurora Project. The results were completely in sync with Nayar’s thoughts.

Topline conclusions include:

Trust and contact 
The increase in patients’ trust in pharma corelates with their contact with pharma. However, only around one-third of patients in the survey (36%) reported “quite a bit” or “a lot” of trust in the pharmaceutical industry overall.

In a separate survey question, 67% of those employed by the biopharmaceutical and medical device industry agree that patients’ trust would “slightly increase” or “significantly increase” if they secretly observed a typical day in their department. 

Pride and engagement
Patient-centricity goes hand in hand with engagement and pride. More than three-quarters of pharma respondents (76%) said they were confident that their company is making the world a better place. The vast majority (81%) were proud to tell people outside the industry that they work in a pharma, biotech/medical device company.

63% of employees agreed that their engagement had improved as a result of the organization’s patient-focused efforts.

Thank you to Amy Nicole for being such a purpose-driven leader in our industry. Her efforts will certainly help illuminate our path. 

If you are interested in illuminating our path to patient-centricity, you may want to get involved in the non-profit The Aurora Project. Curious about the survey results? Read more

Jill Donahue is co-founder of The Aurora Project, Author of EngageRx and creator of The Power of Purpose

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17th Annual eyeforpharma Barcelona (Commercial, Digital and Patients)

Mar 12, 2019 - Mar 14, 2019, Barcelona

Where Pharma Becomes The Solution