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 firstname.lastname@example.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.
The MassBioHQ is thrilled to announce the launch of our new Patient Pioneer Series where we will profile 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 email@example.com.
Ronny Mosston is the Vice President of Patient Advocacy and Public Affairs at OvaScience, a global life sciences company dedicated to improving fertility for women around the world and a pioneer in the patient advocacy field. She serves on the Steering Committee for MassBio’s upcoming Patient Advocacy Summit, which will be held on October 27 in Cambridge. The Summit aims to improve how industry and patient organizations work together to accelerate scientific and drug development to improve the lives of patients.
Q: How does OvaScience ensure the patient is at the center of the work that you do?
From the inception of the company, our strategy was to meet with and learn from the patient and advocacy leaders and incorporate their priorities into all stages of the company. We continue to invite patients and leading advocates to share their experiences with the company and continue to engage at each milestone of our growth. This summer we launched a first-of-its-kind educational forum for the fertility community focused on the overlooked area of egg health. The unbranded site— www.egghealth.com—provides information and resources solely for the patients’ educational benefit.
Q: What is your advice for life sciences companies that want to engage in patient advocacy initiatives?
A strong commitment from the CEO and leadership team in the early stages and throughout the growth of a company is essential to building a sustainable, comprehensive and respected patient advocacy strategy. It is most effective when tied to corporate and functional goals and is valued as a top priority throughout the organization. There is an increasing trend from leading companies and regulatory bodies to include patient reported outcomes as a critical data point in all stages of the company’s development, including clinical trial design, recruitment and progression. Organizations that earn respect and support from the patient community map out short and long term internal and external opportunities to include the voice of the patient to accelerate the organization forward.
Q: Where do you see the patient advocacy field in the future?
My personal hope is that working in patient advocacy in industry is recognized and promoted as an exciting and important professional option for those seeking a career in life sciences. Companies at all stages of development have begun to invest in and value a career path in advocacy to align goals cross functionally with other critical, strategic functions. For those of us in the profession, it is our responsibility to serve as ambassadors and teachers to support the next generation of patient advocates.
BioPharm America 2015 drew more than 850 life sciences professionals from 524 companies and 27 countries around the world and saw 2,274 one-to-one partnering meetings. MassBio, in partnership with EBD Group, the leading partnering firm for the life sciences industry, hosted BioPharm America September 15-17 at the Boston Marriott Copley Place.
“The impressive showing of life sciences executives from around the world is indicative of how vital Massachusetts is to the industry,” said Robert K. Coughlin, President & CEO of MassBio. “The partnering meetings are a valuable opportunity to foster collaborations that will deliver cures for patients.”
The conference kicked off with an Opening Plenary entitled “Giving up the corporate jet and going back to the trenches: Insights from biotech disrupters” featuring four former pharma executives who are now running small biotech companies.
The seasoned panelists shared the triumphs and tribulations of moving from a large pharma to a small biotech but overwhelmingly said the risk is worth the reward. Jeremy Levin, former Teva Pharmaceuticals CEO and current Chairman & CEO of Ovid Therapeutics, highlighted the incredible impact of meeting with patients “eyeball to eyeball” and getting the opportunity to truly know your employees. His fellow panelists agreed and addressed the importance of cultivating an invigorating culture that motivates employees to perform at the highest level.
Tuesday afternoon began with an Executive Discussion, “Rare Diseases: The new norm?” Panelists focused on the potential for disruptive innovation within industry and academia partnerships, the FDA, and incorporating patients in the design of clinical trials. IIan Ganot, founder and CEO of Solid Biosciences and the father of a child with Duchenne Muscular Dystrophy, stressed the importance of listening to the patient. “Patients really know the disease. We like to think we know, but they really know. If you can find a way to work with patients, it’s a great formula to be successful,” he said.
New this year was the Biotech Startup Day sponsored by Johnson & Johnson Innovation. After a series of panel discussions on funding opportunities and strategy, 20+ budding entrepreneurs had four minutes each to pitch their companies to a panel of experts and compete for a prize. Proteorex Therapeutics Inc. came out on top for their innovative technology and services to support drug discovery. Founder & CEO Aman Iqbal and his team won the use of a bench at one of Johnson & Johnson Innovation, JLABS managed locations for three months and six months of mentorship from a Johnson & Johnson Innovation team member.
Other panels throughout the conference covered hot topics such as regenerative medicine, externalizing R&D, biomarkers, precision medicine, digital health, and big data. BioPharm America will return to Boston in the fall of 2016.
The MassBioHQ is thrilled to announce the launch of our new Industry Innovators Blog Series where we will share the stories of incredible individuals and companies making an impact in the life sciences industry! If you are interested in being interviewed or contributing a guest post to our blog please email firstname.lastname@example.org.
At one of MIT’s recent major career fairs, only 3% of the employers in attendance represented the life sciences. Surprising? Yes, considering that MIT is in the heart of Kendall Square, recently named the number one hub for life sciences in the world. It certainly shocked James W. Weis and Nathan Stebbins, PhD students at the prestigious institution and co-founders of the MIT Biotech Group.
There’s a lot of anxiousness towards careers [you hear statements like] ‘there’s no faculty jobs’ and ‘what’s everyone going to do’. James and I originally started digging around to understand what resources exist at MIT for students that want to get connected to the biotechnology industry and what avenues exist for students who want to be entrepreneurs in the lifesciences. We actually found that MIT students, surprisingly, have a small connection with the outside biotechnology world.” – Stebbins.
About 25% of PhD students at MIT are doing research directly involved in the life sciences and many more are doing tangential work. Weis and Stebbins recognized a need to close the gap between academia and industry at MIT, and decided to take the necessary steps to make it happen. After countless hours of brainstorming and meetings with high level executives from academia and industry, the empowered entrepreneurs launched the MIT Biotech Group in April of this year – with the full support and encouragement of MIT’s administration. Their hard work has paid off. Within a few days of the inaugural email invitation, over 200 students signed up to get a taste of the life sciences industry. The group currently has over 500 members comprised of undergrads, graduates, and PhD students. Read the rest of this entry