The Power Of Empathy
In a bid to better understand and engage patients, pharma companies are becoming as compassionate as they are scientific.
Emotional intelligence within the workplace is the source of countless self-help books and it is easy to see why. The importance of managing your emotions and being aware of others may seem axiomatic, but rules, regulations and hierarchical structures are not always conducive to keeping a clear head.
Of course, emotional intelligence is critical in any industry, but within pharma, the stakes are sobering: it could save a patient's life.
The hardnosed rigor of science and the sensitive nature of empathy may make for strange bedfellows, but as pharmaceutical companies intensify their efforts to understand the patient more holistically, these disparate fields are coming together.
Fostering a culture of empathy throughout the organization is pivotal, says Emily Mason, Director of Patient Experience, Astellas. One of the ways the company has encouraged this ethos is through the ‘Astellas Patient Focus Experience’.
The initiative sought to bridge the disconnect between the ways different departments related to the patient. On one end of the spectrum, you have the sales teams on the front-line, engaging with physicians, hearing first-hand what patients struggles are like; on the other end, you have the back-office roles, where the patient is viewed through a more atomized lens, says Mason.
The effort enlisted colleagues from across the organization, from medical and development to commercial and back office support roles, to create a workshop that would give employees a panoramic view of the patient experience, while “pushing them to think about how their own role connects to the patient, even if it's indirectly, as well as how we can collaborate better as an organization, to really shape a more patient-centric view,” she says.
Employees attending the workshop reviewed comprehensive case studies of patients, going beyond specific treatments to look at the holistic impact of a diagnosis, from early symptoms to the painstaking toll it places on their professional and personal life. Attendees brainstormed the hypothetical ways the company could help the patient and caregiver directly or through partnership with other stakeholders in the broader healthcare ecosystem.
85% of the employees that participated said that the session really strengthened their understanding of patient focus. 83% of employees reported that the session helped them feel more connected to patients and understand that their work had an impact on patients.
Sharing is caring
A similar bid to instill organizational empathy, dubbed the ‘Astellas patient and caregiver week’, invited a host of patients and caregivers to speak about their experiences to employees.
The week-long program also provided a platform for employees to share their own experiences, either as a patient or a caregiver, says Mason. The intermingling of the professional and the personal has since had a snowball effect, encouraging other employees to share their stories too.
“It really started to foster this idea that you are not only coming to your job every day to do what you do but really recognizing we are all patients and caregivers ourselves and bringing that mindset into thinking about different strategies and how we do our work to bring that level of personal connection.”
Astellas also ran an experiential pilot to give employees a first-hand account of what it is to like to suffer from overactive bladder on a day to day basis. Attendees undertaking the three-day pilot had to drink 96 ounces of water every day to help simulate the urgency and frequency of OAB symptoms.
To hammer home the disruptive nature of the condition, participants received regular text messages detailing the necessary precautions OAB patients would have to take in any given situation. They were advised to pack an extra change of clothes in case of an accident and instructed to excuse themselves from whatever they were doing to find a restroom, says Mason.
How did Astellas gauge its effectiveness? “We had a debrief session with the participants afterwards. I was really struck by a comment from someone on our clinical team: ‘Before this pilot, I saw patients more as statistic in a clinical trial but now I feel that they are not a number — they are a person.’”
The company also conducted a pre-post poll and found a significant shift in employee’s mindsets. Respondents said thinking like patients has helped them to execute their job better, she says.
The ethics of empathy
In the pre-approval access (PAA) space, often referred to as “compassionate use,” empathy has ethical and scientific dimensions. Christine MacCracken, Director of Patient Support at Janssen and her colleagues have implemented innovative mechanisms to address the needs of seriously ill patients who are seeking access to investigational medicines.
Operating under the auspices of Janssen and in close collaboration with the Johnson & Johnson Office of the Chief Medical Officer, the process is designed to “hear, heed and implement the voice of the patient.” MacCracken collaborates with R&D colleagues across Janssen to implement PAA strategies for patients.
“A lot of the work we do is changing hearts and minds. It is not only looking towards the future, where there may be a commercially available product for broader populations, we must also address the needs of patients who cannot wait for a prescription-based therapy, and in what circumstances can we make that drug available. It is in these circumstances where treating physicians make requests of pharma companies for investigational access.”
To support its decision making around compassionate use requests, Johnson and Johnson launched an innovative collaboration with the Division of Medical Ethics at the New York University (NYU) Langone Health to form the Compassionate Use Advisory Committee (CompAC).
Comprised of external bioethical experts, physicians and patient representatives selected and managed by NYU, the purpose of this CompAC program is to ensure a fair, objective and ethical evaluation of single patient requests received by Janssen for investigational medicines.
“While there are well established internal processes for reviewing and triaging patient requests, we also utilize CompAC to review cases from a bioethical lens to support our decision making. Inherently, companies have bias, and in pre-defined cases, CompAC reviews them and provides a recommendation to us for consideration in the final decision. They also review our overall strategies for pre-approval access with this same lens,” says MacCracken.
Indeed, these measures may seem like additional administrative burden to clinical teams busy working to complete a clinical trial program. It may feel challenging to plan for investigational requests — as a group that collaborates and supports these teams, we also appreciate these challenges, but with this collective understanding, comes empathy for our patients. Personalizing the patient experience also hits home, she says.
“We have discussions where we explore the notion of a request — being for someone’s mother, spouse or anyone for which we care deeply and ask how we’d want that request handled. While the medication is the tangible item being requested, fundamentally, we all would want to know our request is handled quickly, fairly and equitably.” In order to create this framework for decision making, teams must plan early and often, MacCracken says.
It is not that people don't have empathy, the pre-approval access space just requires a different form of empathy, says MacCracken.
“People may be unsettled at the notion of providing access to medications still in development. There's always the concern that providing a drug prior to approval may somehow jeopardize the development program, and these concerns must be addressed and mitigated upfront. Change can take time when you are modifying behavior and culture.”
The feedback from CompAC helps to allay these fears however. When teams present a pre-approval strategy or a specific case to CompAC, it is “transformational”, she says.
“The insights CompAC provides are extremely helpful to teams because if you are not a bioethicist or a patient, it is difficult to take those perspectives into account. Having different observations and considerations heard and considered is critical to ensure a holistic assessment.”
Change is incongruous
Companies adhere to a tried and tested formula for getting drugs to market, any deviation, however slight, risks delay and unexpected outcomes. “There is a certain reliance on predictability that pharma clings to,” she says.
The challenge is also a cultural one. A reality MacCracken confronted when implementing the ComPAC initiative across different therapeutic areas. “Not everyone initially views this process as a must-have, but they come to realize the unique benefit of such a model which supports patients as well as the organization in its decision making when considering patients in need. It is a model we are seeing replicated beyond Janssen which will allow more patients to benefit”.
Empathy initiatives are symptomatic of a broader movement in pharma and ultimately in healthcare, says Mason. As pharma companies strive to involve patients earlier in the development process, a more nuanced picture of the patient is emerging.
She predicts pharma will follow in the footsteps of the broader healthcare system, where providers bring in patients to sit on some of the broad conversations that they have to really make sure that the priority is reconciling what is important to patients and what is important to providers.
Trends in consumerism have also energized empathy efforts, says Mason. Patients have more ownership over their conditions than ever before. They want more than just a drug from a pharmaceutical company.
“Patients want the service and support that's really provided to them in all other industries that they deal with and pharma and healthcare in general have been behind.”
This level of engagement is starting to take root within the pharma industry however, says Mason. “We are committed to doing even more for patients and caregivers and are listening to them in new ways to ensure that what is important to them shapes what we do and how we do it as an organization.”
Emily Mason will be sharing her insights at eyeforpharma's annual Patient Summit USA event in October.
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