Patient Summit USA

May 2, 2013 - May 3, 2013, Philadelphia

Understand the patient journey to build better adherence and engagement platforms

How to Align Your Culture with the Patient in Mind

Patient centricity is everyone’s goal, but it’s still a cultural shift away.



Many companies express their desire to become more patient-focused, but executing a patient-centric strategy continues to be a challenge for many. A huge challenge is lack of confidence around strategy, but the solution lies more in pharma’s ability to shift its culture. As the late business management expert, Peter Drucker, once said, “Culture eats strategy for breakfast.”

Strategy simply cannot work without the right language, mindset, and motivation across the company, as discussed in a recent eyeforpharma webinar, facilitated by Jill Donahue, co-founder of The Aurora Project (the goal of which is to illuminate the path to patient-focused practice). Here are some highlights from the webinar, which brought together patient advocacy experts and a patient living with a rare cancer to discuss some ideas for how to enhance the culture of patient focus in pharma organizations.

Getting internal buy-in

In order to be salient, patient focus needs to be in the mindset of everyone across the organization. It requires both a top-down and bottom-up approach so that a new culture permeates through every department. "If the pharma CEO sees the real value of patient-centricity, it makes a big difference. In some companies, the CEO is very patient-centric, and patient focus is pervading all departments of their company. Starting at the top is a really smart move,” explained one of the panelists, Jack Whelan, cancer survivor, Research Advocate, Principal, and Event Speaker.

Leadership is a key driver of cultural change, but it also comes from the organizational members on the ground, explained Kalahn Taylor-Clark, Associate Vice President and Head of US Public Affairs and Advocacy, Cardiovascular Unit at Sanofi.“They have to feel inspired to want to embrace patient-centricity as a way for them to work,” she said.

Michelle Berg, another panelist, is the Vice President for Patient Advocacy for Abeona Therapeutics, a clinical stage company that develops gene therapy and plasma-based products and services for severe and life-threatening rare diseases. For Berg, acquiring support for patient focus is also about tailoring the message to specific departments. “You have the regulatory group, clinical operation, marketing, etc. I think that it can quickly get overwhelming on how to create that culture, but if you start small and simple and speak to the priorities of those individual groups, that would be a great place to start. Certainly, they will not receive a message in the same manner because their focus is different,” she explained.

You can’t just create it [treatments and services] for people; you need to create with people."

Berg also shared the experience of her company’s clinical operations group, which readjusted their mindset after speaking with caregivers and parents about the travel and accommodation needs of young patients taking part in a trial: “We went in with presumptions, but after hearing directly from families, we walked away with some great information and I felt really good about what we put together for this trial.”

Donahue added, "When we are purpose-driven, we are more profitable.” When organizational members touch base with their purpose and their reasons for joining or staying in the pharma industry, internal buy-in for patient focus happens more effectively. When pharma members reconnect with this fact - that they have the power to have an impact on the lives of patients - they become more engaged in their roles, which positively impacts the company’s bottom line.

Patient involvement

Listening to patients is a core facet of patient focus. According to Taylor-Clark, “It is so incredibly important that we have patient voices not just in marketing, but in really thinking through how we can bring patients as part and parcel of what we are creating. You can’t just create it [treatments and services] for people; you need to create with people."

Sanofi is making a conscious effort to work closely with patients during the trial design stage. Typically, companies retrieve patient insights from a single survey and incorporate those into the trial design, but actively involving patients could inform trial protocols on a daily basis. Taylor-Clark admitted that their trial design team was initially skeptical about bringing patients in too closely, given they don’t have the clinical expertise required for trial design. However, she pointed out, “At the end of the day, the patient is the absolute expert. Our trial design team was astounded at the contributions that one patient could make when we sat in the room with them to help them make decisions around the trial design.”

Involving patients also means bringing in their families and caregivers, especially for very young patients. "It’s the parents and grandparents who have the questions," said Berg, who provides education and support about gene therapy to patients and families.

Whelan also pointed out that true patient focus is about creating a fluid flow of information so that patients can keep track of how they are doing. This also means that trial protocols must be designed in such a way that patients have access to interactive data collection and reporting tools, so that what they report instantly gets back into the hands of researchers.

Change in language

According to Whelan, defining patient focus can be challenging because it is tantamount to defining how to behave, think and engage with compassion. Some companies may even be using patient centricity as a seal of approval without really understanding what it is about. “We are patients and people,” he said, and so companies should refrain from using terms such as ‘subjects,’ ‘participants,’ ‘members of cohorts,’ or other terms that tend to de-humanize patients.

A change in language goes a long way. When organizations speak to colleagues with compassion for patients, they tend to be more excited and engaged at their jobs. “This isn’t just morally imperative, but it contributes to growth as well,” highlighted Donahue.

Additionally, rather than using business terms to define success, pharma must measure in terms of how many patients have benefited from their products and services. With new therapies that bring in new assumptions, measuring return on investment (ROI) has become more complex. During the webinar, one audience member even pointed out that psychosocial metrics should be included in computing ROI.

Internal buy-in, patient involvement, and change in language are critical factors in making the cultural shift towards true patient focus, but in order to make it a sustainable strategy, pharma must always strive to improve. “The bottom line for me is to not necessarily believe that we are already there, but that we can do more,” said Taylor-Clark.


Implementing a cultural shift towards real patient focus across the pharma company will be a key topic at eyeforpharma’s 13th Annual Patient Summit USA 2016, which will be taking place on October 10-11 in Philadelphia.


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Patient Summit USA

May 2, 2013 - May 3, 2013, Philadelphia

Understand the patient journey to build better adherence and engagement platforms

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