What Do Patients Want From Pharma?

If it seems like we are always asking ourselves this question, that’s probably a good thing. All relationships require nurturing and regular self-examination.

If it seems like we are always asking ourselves this question, that’s probably a good thing. All relationships require nurturing and regular self-examination. The only way to create strong partnerships is to ask ourselves now and then what we’re contributing and whether or not it is what the other party in the relationship is truly seeking.

So what do patients want from pharma? The obvious answer is, of course, effective and safe treatment. That never has and never will change. But a recent study from Manhattan Research has me thinking about what else patients are seeking from pharma.

Patients want support
One thing patients want, it appears, is access to support. 30 percent of online consumers with a chronic condition and 38 percent of caregivers are interested in registering for a patient support program, according to the Manhattan Research study. These programs appear to be working, since 75 percent of online consumers who used online pharma patient support programs said they feel confident the prescription they have is right for them or those they take care of because of these services. The most popular features mentioned by the 6,607 US adults in the study were financial assistance, meal plans and recipes, tools to track and manage a condition and a registered nurse hotline.

For rare diseases, which are often challenging and lifelong conditions, assistance like this may be especially valuable, so long as it truly meets the needs of the people who are affected–and providing that patients and caregivers know how to access assistance. Monique Levy, Vice-President of Research, notes that “pharma isn’t top-of-mind as a destination, so marketers must consider partnering with other health resources such as general health websites, pharmacies and hospitals in an effort to gain traction for these programs.”

The key word is partnership
After last year’s World Orphan Drug conference, Melissa Hogan wrote a compelling post entitled “What We Want from (Big) Pharma,” on her Saving Case blog, that is definitely worth a second look. She talks about four things that caregivers want from companies that go beyond the foundation, which is excellent science:
– Transparency
– Commitment
– Compassion
– Partnership

Here is how Melissa Hogan elaborates on the last one: “We see it as a partnership and expect to be treated as an equal partner in this process of trying to save the lives of our children. It’s not even necessarily ‘patient-centered’ relationships as that term is now being bantered about so much, it is partnered relationships, with parents, physicians, payors, regulators, and pharma as equal partners. We’ll play our part, and we’ll even give you guidance as to how to play yours.”

Know your partners’ needs
What do patients and caregivers want?  All you have to do is ask.  We are constantly impressed with how open-hearted rare disease patients and caregivers are, sharing their lives and stories to help others who face the same challenges…and how willing and even anxious they are to help us understand their needs.

There are rules and regulations to observe of course, but to echo Melissa Hogan, let’s not forget that we are truly partners in improving the lives of people with rare diseases. The relationship between patients, caregivers and pharma companies is one of mutual interest, but it also must be one of mutual respect.

And if you have any questions, just ask.

Photo courtesy of Bilal Kamoon on Flickr