Table 2.

Quotes Regarding Benefits to Patient Engagement in Medical Product Development.

Benefit	Quotes from Patient Group Representatives	Quotes from Industry Sponsor Representatives
Improving the Quality and Efficiency of Clinical Trials	We want to make sure that industry understands that we have a registry in place and that we can enroll trials quickly. And that if they come into our community, we're going to help them, however we can, through the clinical trial process. So I think ultimately our goal is to bring new safe, effective products to our patient community. And the more we can bridge some gaps and fill in where our expertise is—we want to make it easy for the scientists, we want to make it easy for the clinicians, we want to make it easy for industry, and we want to make it easy for FDA	[Patient engagement] helps get medicines that are meaningful to patients to them faster If you're designing, say, clinical trials or any materials that have patient input, then it will be more attractive to patients as a whole. So a clinical trial will be potentially simpler for patients to participate, and then we are getting benefit from improved recruitment or enrollment in a clinical trial that gets the medicine to market faster for patients
Amplifying the Patient Voice and Address Patient Needs	We always [keep] the patient in mind. We were founded by patients. Our money comes from patients and their families. So we want to make sure that it’s really addressing something that matters to patients	We’ve certainly worked to get the patient voice into advisory committees, even how we really think about our submission documents and what kind of strategy…what gets focused on, what are the key components that come out of our submission documents in terms of what we emphasize. The way the patient views that benefit/risk equation might be different than maybe how a regulator might see it
Motivating Patients and Researchers to Get More Involved	The benefit is that the more motivated our organization becomes with our participants, the more motivated the researchers become in their work	For our own colleagues, when they’ve engaged with patients they feel more motivated, they feel more inspired. We believe [the effect is positive] in terms of retention of colleagues, productivity of colleagues and just the general effect on the workforce
Strengthen Grassroots Advocacy of Clinical Trials	I think that what we've been able to do is mobilize a grassroots effort over time that is sophisticated and knowledgeable about drug development. We've empowered tiny family foundations and we gave them the tools to advocate We bring our community volunteers from across the country to advocate for a DOD appropriation for cancer research annually That benefits our community by making sure that the FDA understands the unmet needs in our community and is kind of primed for understanding what would be the main benefits of a drug	Deeper relationships with the advocacy community helps individuals feel like they've been a part of the development of a new medicine, and are therefore willing and able to champion it to ensure that it gets to people who need it Better relationship with the community has far-reaching impacts that you wouldn't necessarily anticipate. It's not just about learning how we can make existing medications better, but also potentially sparking ideas for unmet needs we weren't aware of, helping to build greater bridges between the community and how the industry is viewed as a whole I think it really makes a difference for how the patient community views the pharmaceutical industry … and that we truly are partners in disease management and not what tends to be recorded on the front page of the Wall Street Journal
Enhancing the Reputation of the Sponsor, Trial	No comments	I think we think that engaging with patient advocacy groups brings a positive reputational benefit to [company’s name]. We feel it’s the right thing to do, and by putting our money where our mouth is and actually doing it, we do feel it probably helps us with reputation