Creating and delivering an optimal patient experience was at the forefront of an educational presentation Tuesday, May 8 at Asembia’s 2018 Specialty Pharmacy Summit in Las Vegas, Nevada. Moderated by Thomas Cohn, Asembia’s chief strategy officer, the presentation focused on industry efforts to design and implement effective ways to determine the true needs of patients and the role of technology in the process.

Joining Cohn were Rahul Bhatia, senior director of commercial strategy and operations for Insmed, a biotechnology company that works to improve the lives of patients with serious and rare diseases, and Farris Ibrahim, director of Nuvera Life Science Consulting, a boutique firm that specializes in designing and implementing patient experiences.

Bhatia discussed an Insmed campaign that focused on nontuberculous mycobacteria (NTM) to raise awareness of the condition and deliver the best possible patient experiences. He said there are twice as many undiagnosed patients with NTM as there are diagnosed patients, which is typical for a rare disease. The symptoms often get confused with other conditions, such as asthma and chronic obstructive pulmonary disease. There are currently no FDA-approved treatment options for NTM, Bhatia said.

“Patients to go through a long journey before they get diagnosed,” Bhatia said. “That journey could be upwards of 2 years.”

In order to deliver effective patient experiences, Bhatia said, Insmed first sought to understand their needs and expectations, then worked to create the capabilities that would address those needs. Insmed collaborated with Asembia throughout the project, according to the presenters.

Cohn said Asembia-1, an integrated online software platform that assists with specialty phar- macy operations, prescription workflow, and overall patient management is being used by Insmed to design its patient experience. It provides real-time data and analytics, and business intelligence.

According to Bhatia, Insmed started with the data it had on approximately 45,000 patients with NTM. They used that to “connect all the dots,” by identifying the key stakeholders and where the problems are and discussing that information with patients and caregivers.

Nuvera worked with Insmed to develop a strategy for improving patient experiences. According to Ibrahim, a treatment experience blueprint was created to address the need and determine influential moments along a patient’s holistic journey.

“Where and when did they have an impact with the patients and the providers that they were going to be working with when the product came to market?” Ibrahim asked.

The blueprint incorporates a holistic understanding of patients and providers and patient support expectations—a set of complimentary services across provider workflows—and establishes boundaries of where to start and stop programs.

Nuvera also created an integrated program design model to address the need to build meaningful support for patients. 

“You have to know what is going to be meaningful to these patients,” Ibrahim said. Ibrahim noted they discovered that the stage of prescription and therapy onboarding provided the greatest opportunity to engage patients and to impact them. This includes supporting the patient through enrollment, access to resources, providing brand and disease area education, facilitating the first dose, and administering prescription coordination.

“How are you going to educate how a nebulizer works,” said Ibrahim. “It’s about keeping things moving forward and that they continue to be successful.”

Bhatia said an example is for respiratory therapists to provide at-home guidance for use of devices. “Some patients need training on how to use it,” he said.

Validating patient needs is also important, the panelists noted.

“All too often, we sit in rooms together around the table and figure out ‘this is what’s going to be best,’ and that’s what we end up going to market with, and we never actually check with the end user,” Ibrahim said.

“We worked with patients and actually checked with the services, validated their needs, walked them through what we thought their journey was, modified it, and we did that with what we call the customer co-creation process,” he added. This process starts with enrollment support, and includes reimbursement services and co-pay assistance, third-party support for caregivers, and device and adherence support.

Bhatia said the process was important for each patient. “What is relevant to a physicians’ office is different than what is relevant for a patient and caregiver,” he said.

Overall, the speakers said the patient experience was critical to treatment and adherence. According to Cohn, technology has the potential to assist in that area.

“It’s important to have a system that’s flexible, and can provide support for unique journeys,” he said. “It needs to be personalized to meet the individual needs of the patients.”