How can pharmaceutical companies engage with patients? Lessons from rare disease brands

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Eileen O’Brien shares her thoughts on how pharma marketers can build better relationships with patients, looking at the lessons pharma can learn from rare disease brands. If information is power, then the Internet and social media have enabled a huge power shift in healthcare into...Eileen O’Brien shares her thoughts on how pharma marketers can build better relationships with patients, looking at the lessons pharma can learn from rare disease brands. If information is power, then the Internet and social media have enabled a huge power shift in healthcare into... Eileen O’Brien

Siren Interactive

As we enter our marketing excellence focus month, Eileen O’Brien looks at rare disease brands to find out the lessons pharma marketers can learn in building relationships with patients and advocacy organisations.

If information is power, then the Internet and social media have enabled a huge power shift in healthcare into the hands of patients. Traditionally, communication flowed from pharmaceutical companies to physicians to patients. Via the Internet and social media, patients now have easy access to medical journals, as well as other patients and caregivers dealing with the same disease. While the average person doesn’t have the medical expertise or scientific training to interpret some of the information, they do have access, which provides the opportunity to learn and ask questions.

This seismic shift has led to the growing “ePatient” movement — empowered, engaged and educated patients and families — who take an active role in their healthcare. These patients are looking for a partnership with healthcare providers, including pharmaceutical companies. The latest Manhattan Research data shows that 109 million U.S. adults use social media for health information.

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"...109 million U.S. adults use social media for health information."

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The pharmaceutical industry has taken note, and marketers are working to develop relationships with patients. In the rare disease space, patient engagement has always been critical to every step of a drug’s development — from filling clinical trials, to getting FDA approval, to obtaining reimbursement, to getting patients diagnosed and promoting adherence. This collaboration also provides patients with access to knowledge about the latest advancement in research or treatments, which can help expedite the process and shape communication to more efficiently bring a drug to market. As we move toward personalized medicine and therapies that treat specific genetic subsets of larger diseases, many brands will be targeting smaller patient populations. There can be substantial rewards for both the pharmaceutical companies and the patient advocacy organizations that can get it right.

So what lessons can be learned from the rare disease niche?

1) Create guidelines regarding patient interactions. This helps internally to enable the pharmaceutical company to present a consistent message and helps set expectations externally. Many advocacy organizations are unaware of the restrictions that pharma companies work within. Genzyme publicly shares their Principles of Collaboration. I asked Jamie Ring, Senior Director, Patient Advocacy, about these principles: “This is something we’re very proud of as an advocacy team within Genzyme, that these values are always applied and have been for years. We want to make sure there is authenticity, benefit and respect in every collaboration we have with the community.” The company has even launched a rare disease advocacy website, Genzyme Rare Community. (Full disclosure: Genzyme is a client of Siren Interactive, however, we did not work on this project.)

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"Many advocacy organizations are unaware of the restrictions that pharma companies work within."

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2) Develop relationships with influential patient opinion leaders. Many rare diseases do not have national advocacy organizations, but there are usually key patient advocates who use the digital space to share their opinions. The Internet is like a giant digital soapbox that can give every patient visibility and an amplified voice. Companies with rare disease therapies typically have patient advocacy employees who are dedicated to forming relationships with these patients or caregivers. This role is separate from the marketing function. With direct access to an audience online, these patient opinion leaders (POLs) can be as important as physician key opinion leaders (KOLs). This means that pharmaceutical companies need to have relationships not only with the advocacy organizations but also with individual POLs. Pharma companies should evaluate the entire advocacy landscape — offline and online, organizations and individuals — when deciding who to work with.

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3) Communicate early and often. The topic of interacting with advocacy groups was addressed by a panel at the Rare Disease and Orphan Drug Leadership Congress in July. In addition to the rise of empowered patients using social media, the transparency of the drug pipeline has led to a desire for information. Jill Panetta, PhD, of the Polycystic Kidney Disease Foundation said that rare disease patients are closely following the advances in basic research and “patients are impatiently waiting for treatments”. The speakers all agreed that it’s essential for biopharma companies to proactively communicate with advocates. The earlier that POLs and advocacy groups are involved, the better. A lack of awareness and understanding can be a barrier to clinical trial participation. As a result, advocacy groups are taking a much more active role in supporting clinical trial education. Ongoing communication is essential — even if you communicate that you have no updates. As one panelist noted, “If you don’t communicate with the patient community, they will think the worst and start making things up”.

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"In addition to the rise of empowered patients using social media, the transparency of the drug pipeline has led to a desire for information."

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4) Listen and learn from the patient community. Listen to the conversations happening online to learn what patients want and need. Important insights can be gleaned from listening – everything from the terminology used to how they feel about your competitor. The simple, but powerful, act of listening can have a big impact. Use the lessons to reach out in an effective and appropriate way.

While every advocacy organization is different and has different needs, and pharmaceutical companies have different ways of interacting with patients, collaboration can be done successfully. What else can be done to truly put the patient at the center through an approach built on collaboration rather than just a variation of traditional push marketing?

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Previous article by Eileen O’Brien:

Rare is different: patients and caregivers are undisputed “power users” of social media

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pharmaphorum-social-media-workshop-22nd-November

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About the author:

Eileen O’Brien has 16 years of interactive healthcare marketing experience. As Director of Search &, Innovation at Siren Interactive, a relationship marketing agency focusing on rare disorder therapies, she oversees search strategy, CRM, analytics, and social media. Previously, she was Director of Search, Media &, Insights at Compass Healthcare Communications, where she developed the social media practice. She is an opinion leader on social media and has been a speaker at industry conferences and quoted in industry publications. Eileen moderates the #SocPharm tweetchat as @eileenobrien on the first Wednesday of every month at 8 p.m. (U.S.) where thought leaders discuss best practices in pharmaceutical marketing and social media. For more information, email Eileen at eobrien@sireninteractive.com, or visit www.sireninteractive.com.

To what extent is your organization building effective relationships with patients?