Pharmaguy's Insights Into Drug Industry News
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Pharmaguy's Insights Into Drug Industry News
Pharmaguy curates and provides insights into selected drug industry news and issues.
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How Patient Advocates Make Money from Pharma with the Help of Agents Who Take a Cut

How Patient Advocates Make Money from Pharma with the Help of Agents Who Take a Cut | Pharmaguy's Insights Into Drug Industry News |

A health care company is hoping that it can connect some of the most influential and underutilized health experts—patients—with brands that are willing to pay for their knowledge and connections.


Leanna Mullen has Gaucher's disease, a rare genetic disorder that is associated with a variety of debilitating symptoms, from lung disease to arthritis. Mullen, a New Jersey-based television producer in her late twenties, has built up a vast network in the patient advocacy community and has used her media platform to raise awareness of her disease. Several months ago, she was contacted by a research firm called BrandTrust regarding a survey into the mental health of patients with Gaucher's. She was told that the information would be delivered to a pharmaceutical company, but she declined to disclose the company to me after signing a non-disclosure agreement.


If Mullen could recruit a diverse set of patients to participate in the research, she would be paid about 80% of a $10,000 fee. "I had the connections, and was able to recruit almost my entire demographic within two or three days," she says. Mullen was able to reach out directly to patients in closed Facebook groups and private forums, which would have been off-limits to recruiters. "Many people wanted to support research that will help make others' lives better," she says.


Mullen's name was initially floated to BrandTrust by a Boston, Mass.-based company called Wego Health, which has built up a vast database of patient influencers over the years. Wego's chief strategy officer, David Goldsmith, came up with the idea of connecting these patients directly with brands, after researching how other sectors, such as transportation and tourism, slowly adapt to new labor models as part of the "sharing economy" movement. He figured that health care was next.


With Goldsmith's new service, Wego Health Experts, brands can connect with patients for help with finding clinical trial participants, research and surveys, "awareness" campaigns, speaking engagements and so on. Goldsmith says some of these processes, such as clinical trial recruitment, used to take months and cost "tens of thousands of dollars," which typically went to third-parties rather than patients. But influencers like Mullen can often get the job done faster and for a fraction of the price, he adds. Wego makes money by taking a cut of the overall fee (in this case, the remaining $2,000 of the $10,000 offered via BrandTrust).



Compared to other industries, health care carries some unique opportunities, risks, and challenges. Nick Blum, general manager of Catalant, a company that connects big brands with freelance experts, stresses the need for full awareness of biases and agendas. "The key here will be transparency," he says. "Who has what relationship with whom, how does compensation flow, what incentives exist, and so on."


Mullen says she did not disclose in every discussion that she would be paid, as she figured that it would be obvious. "They're aware that there's usually some sort of headhunter," she says. Also, she figured that the risk would be low, as it was a survey rather than a clinical trial.


Bioethicists such as New York University's Arthur Caplan have some concerns about patients leveraging their influence on behalf of brands. He compares this approach to celebrities like Bob Dole and Barry Manilow appearing on television to tout pharmaceutical products they may never have used, ranging from Viagra to cholesterol medication. In the long run, he explains, there's always the risk that trust will be eroded.


Caplan suggests that guidelines should be formulated to clarify how patients should disclose conflicts of interest, if they're getting paid. That's particularly important if they're being asked to recruit for a potentially risky clinical study.


For her part, Mullen wouldn't agree to every project sent her way. She was willing to tap into her network for this project, as she could personally vouch for it having taken the study. And the money that she made helped her with expenses related to managing her disease. "For many of us, this could be an opportunity make others' lives better and become a part-time job," she says.

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Pharma Marketing Blog: Novartis Respects the Patient Perspective and Pays for It Too! But Is It Absolutely Transparent?

Pharma Marketing Blog: Novartis Respects the Patient Perspective and Pays for It Too! But Is It Absolutely Transparent? | Pharmaguy's Insights Into Drug Industry News |

On, David Palacios, Head of Global Patient Relations, and Sanja Njegic, Head of Patient Advocacy & Relations in Europe at Novartis, explain how their company has moved from working with doctors and payers to working directly with patients. The interview was recorded at Eyeforpharma Barcelona 2016.

“We developed last year what we call the 'patient declaration,' which is a public statement about what patients can expect from us,” said Palacios. “It is an internal and external commitment. By having this document everybody in the company needs to work seriously to honor what we said in the patient declaration. That has triggered a lot of discussion internally.”

Some of that discussion must have been around "transparency" with regard to compensating patients -- especially patient bloggers and patient advocates -- for their opinion, much like pharma has traditionally paid physician Key Opinion Leaders (KOLs) for their opinions. Did that discussion result in any relevant disclosure in the "patient declaration?


Find out here.

Pharma Guy's curator insight, July 23, 2016 9:40 AM

Back in 2013, the U.S. Justice Department  filed a civil false claims lawsuit against Novartis Pharmaceuticals Corp. involving alleged kickbacks paid by the company to health care providers (read the details here).

DOJ claims that Novartis violated the Anti-Kickback Statute by paying doctors to speak about certain drugs, including its hypertension drugs Lotrel and Valturna and its diabetes drug Starlix, at events that were often little or nothing more than social occasions for the doctors. 

Many speaker programs were held in circumstances in which it would have been "virtually impossible for any presentation to be made, such as on fishing trips off the Florida coast," the suit claims.

"Other Novartis events were held at Hooters restaurants."


Read "Novartis Wines -- er, Beers -- and Dines Docs at Hooters!";