On Patientpower.eu, 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?”

In January, 2015, about 6 months before Novartis published its patient declaration, I wrote about a German MS patient blogger/journalist who spoke of her contribution to “Living Like You,” a Novartis Pharma AG website, Facebook page, and Twitter account driven by a “community” of patient bloggers. At that time, neither Novartis nor the patient blogger revealed that Novartis compensated bloggers for their contribution (read “Transparency is Good in Theory, But Not in Practice“). Sometime after that, Novartis added this statement to the website:

“Living Like You bloggers are financially compensated at a reasonable market rate for their time. Payments to bloggers in no way influences their writing, opinions or perspectives on life with multiple sclerosis.” 

Although Novartis’s “Patient Declaration” talks about transparency under “Respecting the Patient Perspective,” it does not specifically mention financial transparency in relation to patients who “share with [Novartis] what it is like living with their condition.”:

“We will listen to the important information patients and patient communities share with us on what it is like to live with their condition.

We believe in the active participation of patients and concerned citizens to improve healthcare services and outcomes for patients. We respect the independence and integrity of patient organizations. We partner with patient organizations around the world in compliance with local laws and regulations on projects of mutual interest and benefit, including disease awareness and education, better understanding the patient journey specific to each disease area, and activity in social media. We support patient activity through social media channels.

We support ongoing patient advisory boards and roundtables in various disease areas where patient group representatives from around the world meet to discuss matters of importance to them.” 

If the remarks of Palacios and Njegic truly reflect how patients are becoming as important to pharma companies as physicians and payers, then it is important that payments to patients and patient organizations be at least acknowledged if not detailed as required by new laws requiring disclosure of payments to physicians.

I know of only one pharma company that pledged to provide those kinds of financial details – Janssen.

A free “Social Media Toolkit for Patient Associations” that Janssen offers to patient advocacy groups includes a statement titled “Absolute Transparency“:

“Janssen is fully aware of the potential pitfall of conflict of interest posed by pharmaceutical companies and patient groups working together. That is why Janssen stipulates that such collaborations may only take place in absolute transparency, with contractual documents specifying the scope and modalities of the interaction. Each year, Janssen companies post on their websites a list of all patient groups receiving contributions and educational grant funding. Each entry includes a description of the project and its objectives. The company also encourages patient groups to post this information on their sites as well.”