Rapid-Fire Panel - Tools of Engagement: How Patient-Centricity Can Advance Product Development
If the science of patient input were human, in what stage of life would it be?
Moderator Karen Rogers kicked off the rapid-fire panel discussion by turning to the audience. She asked the attendees to raise their hands to vote for which life stage they believe the science of patient input to be in. Overwhelmingly the audience believed that this field is in its infancy, which set the stage for the panelists to introduce their work.
Kim McCleary, managing director, FasterCures, opened by saying, "In the immortal words of Ned Stark, winter is coming." She asked participants whether they were already preparing for winter by purchasing boots. She followed with the story of how Nick Swinmurn traveled to a mall in 1999 to purchase men's winter boots, but left empty handed. He channeled his frustration into creating shoesite.com, now known as Zappos. His vision was to provide unparalleled convenience and customer service. McCleary explained that FasterCures had the same vision when deciding to partner with AltaVoice to create Patients Count Network. The network deploys the same search functionality to enable users to identify patient organizations that fit their need. The profile pages provide information that participating organizations submit themselves. McCleary hopes that the research portal will grow to include additional search functions and the ability to build custom queries. The network is still in the shoesite.com phase, but McCleary expects it to become the Zappos of patient organizations.
Brad Hirsch, senior medical director, Flatiron Health, shared how his organization is aggregating oncology health records as a way to understand the patient experience. This effort has required a large investment by Flatiron because of the way that clinical data are protected and hidden. Regarding this barrier, Hirsch said, "It is not because there is a lack of technological capability. It is not because of a lack of methodology. It is not because patients can't do it." He described what he perceives to be the next frontier of the patient experience, where routine care replicates the process of a clinical trial. All patients would leave the office having a care plan.
Ron Cohen, president and CEO, Acorda Therapeutics, Inc., explained that he was participating to represent the drug developer's perspective, which traditionally, like that of the physician, focuses on disease treatment. Cohen noted that, in reality, "You are treating a person who is challenged with a disease. You have to treat the whole person." However, treating the whole person cannot happen without taking a collaborative approach to this work. After Acorda experienced numerous failures, it approached patients and their partners to understand their experience. Cohen said that this process helped Acorda to gain a sense of direction, which then led to the success of a drug to help people with multiple sclerosis to walk better. Cohen explained, "We treat the community the way we treat key opinion leaders. We are finding that meeting with patients is unbelievably valuable." He closed with the message that collaboration is key and that patients don't fail drugs; rather, drugs fail patients.
Pamela Bradt, executive medical director for urology, Astellas, considers her job to be one where the rubber meets the road in the field of patient centricity. Bradt interfaces with the medical and scientific communities as well as outside stakeholders. She explained that her work to treat overactive bladder must be patient-centric because the condition is defined by a cluster of symptoms and all of the approved therapies are based on Patient Reported Outcomes (PRO). "We use claims data to answer questions about what is going on in overactive bladder," said Bradt. "We have partnered with Humana to put together a new study design." This study design utilized PRO to discover what drives patients during their course of therapy. Astellas found that daily living and quality of life are bottom-line objectives for patients.
Suz Schrandt, director, patient engagement, Arthritis Foundation, began her remarks by stating that data collection does not equal partnership. She used a flow chart to describe how organizations engage with patients. Currently, researchers engage patients after they formulate their questions and outcome measures. By waiting to engage patients until this step, researchers miss the opportunity to ask patients what is really happening with them. "Begin the partnership with patients earlier," Schrandt said. "What if you go all the way to the beginning?" She said that if researchers engage patients from the project's outset, there is never a need to ask them what they want because the researchers would already know. Putting patients in the room ensures that their voice is present in all that you do.