‘7 Billion Voices’: Insights from the Inaugural Intellus Conference in Philadelphia
Last month, our Managing Partner Tatiana Barakshina went to Philadelphia for the first-ever Intellus Worldwide Summit, a conference that stems from the merging of the Pharmaceutical Business Intelligence & Research Group (PBIRG) and the Pharmaceutical Market Research Group (PMRG). Patient voice was a major theme woven throughout the conference.
Tatiana recently wrote a blog sharing her takeaways from Intellus:
The theme of the conference was 7 Billion Voices. And the program committee made sure this was not just another grand name with the same old content. The patient voice was heard this time throughout the conference.
The opening panel consisted of six patient advocates from several rare disease communities. A “patient advocate” is typically a person with the disease (or with children who have the disease), taking an active role in managing patient community, and making sure the voice of the community is heard by clinical researchers, pharma, academics and insurance companies. This job is a million-times tougher if you represent a rare disease community.
This was highlighted by Neena Nizar, founder of Jansen’s Foundation, is a patient with a disease with 8 (eight) cases worldwide. 3 out of the 8 cases are in Neena’s family – both her sons have the disease (Jansen’s Metaphyseal Chondrodysplasia). Another speaker, Nadia Bodkin, founder of EDSers United and Rare Advocacy Movement (RAM), is a patient with three rare diseases, who was just recently diagnosed with another one. In total, the panel consisted of six speakers. These people projected enormous confidence, strength and dedication to their cause (which also happens to be the cause for other patients in their communities). There were several important learnings reiterated by each of the panelists, namely: “time is what we do not have.” Community leaders pleaded for efficient communication and fast action. In the case of many patients with rare diseases, many of them progressive, fast action on behalf of researchers and manufacturers saves lives.
Another takeaway from Intellus: “address community leaders.” When reaching out to patients for research, the best route is through community leaders/moderators. They best understand community rules, accepted practices, and will provide best guidance and advise to researchers on how to secure patients’ participation.
All in all, the theme for Intellus conference – 7 Billion Voices – was reflected in the structure of presentations and demo sessions. In most of the talks I attended, patient voices were in person and present (as opposed to being aggregated into graphs, tables or quotes). Several patients, including oncology patients, agreed to attend the conference and present alongside the researcher.
Video clips, where patients were talking about their daily routines of managing the disease (such as schizophrenia or opioid addiction), proved to be an excellent tool to make the audience live through the most sensitive issues that drive choices and further reflect the importance of patient voice in research.
I wanted to congratulate Program Committee Chair Bill Salokar from research firm SKIM, and all the program committee members for putting together such a rich and impactful program. Look forward to attending again next year!