The Patient Pioneer Series profiles incredible individuals and companies that put the patient first and serve as fierce advocates for the patient population. If you are interested in being interviewed or contributing a guest post to our blog please email lilly.stairs@massbio.org.
Michele Rhee has served as bluebird bio’s head of Patient Affairs since January 2015. Formerly, Michele was Director of Strategic and Program Initiatives of the National Brain Tumor Society where she played an integral role in the overall development and strategy of the organization. Prior to joining the National Brain Tumor Society, she worked at Health Advances, a consulting firm specializing in life sciences new product marketing and commercialization. As a rare disease and cancer survivor, Michele also founded and serves on the Board of Costs of Care, an advocacy organization dedicated to transforming American healthcare delivery by empowering patients and their caregivers to deflate medical bills. She received her MBA from the Yale School of Management and her MPH from the Yale School of Public Health. She currently serves as on the Consumer Health Council of Massachusetts Health Quality Partners.
Michele and patient partner ALD Connect were recipients of MassBio’s inaugural Caring Collaborations award at the 2nd Annual Patient Advocacy Summit recognizing an outstanding patient-industry partnership.
Q: How does bluebird bio ensure the patient is at the center of the work that you do?
The heart of our company is the patient, from being our foundational inspiration to influencing how everyone at bluebird bio makes decisions. The culture is based on the knowledge that we are working to improve the lives of patients in a really transformative way, and the value that we provide as a company is based on our ability to provide true value to patients. Every new bluebird learns about what our patients and families have endured so that we understand what patients’ real unmet needs are, and in every major decision, we incorporate the patient perspective in the same way that we incorporate the perspective of other key stakeholders.
On a practical level, we ensure that our teams understand when and how to incorporate the patient perspective into clinical development, research, and decision-making. We also make sure to bring patients in regularly to talk about their lives and their day-to-day experiences.
Q: What have you learned from working so closely with both patients and industry professionals?
The line between patients and industry professionals isn’t as solid as I used to think it was. I personally am in this field because of my own cancer and rare disease experiences, and many of the industry professionals I’ve met and work with have a similar story: we’re all patients and families in some way, and we all have that same desire to do what’s best for patients. I am surrounded by people share this same priority and motivation, both on the patient and industry side, and it’s really wonderful to see that regardless of who you are or what organization you work for, you can have a positive impact on the lives of patients.
Q: What is your advice for life sciences companies that want to engage in patient advocacy initiatives?
Patient advocacy initiatives are about so much more than just providing sponsorships, although that is a part of it. The beneficial impact of integrated, well-planned patient advocacy or affairs initiatives reach across the company, very similar to an effective Medical Affairs group. However, Medical Affairs is a more well-established function or department at most companies, whereas engagement with patient advocacy groups and the patient community may require more changes in thinking and practice. Working with patients and patient leaders can provide amazing insights into patients’ lives and priorities, and that invaluable information can ensure that a company is making more informed decisions internally in the same way that incorporating the physician perspective can add value. Patient advocacy initiatives can and should be integrated into the larger business strategy, but it’s a new way of engaging. The willingness to accept and implement change needs to be central to those initiatives. Otherwise, it’s easy to revert back to a traditional sponsorship-only type of patient advocacy initiative as opposed to something that can have even more value for both the patient community and the company.