Any one that has been around the pharmaceutical industry for any length of time knows that there is a language that is spoken in pharmaceutical circles. This language is called jargon. To the uninitiated, learning this new language can be quite daunting. This is why in most pharmaceutical presentations will start with a Glossary. The Glossary explains the jargon or for the really trendy jargon, Buzz Words.
A couple of years ago, a term “ecosystem” started to be used in pharmaceutical circles. This term always seems to me to be rather pretentious. I don’t like the sound of it, and I will never use it in my spoken language. Not too long ago, another term started to creep into the pharmaceutical language, and that is Patient Engagement. Everyone who is anyone, is now talking about Patient Engagement. The only problem is that the patient is so often not involved. Most of the people talking about Patient Engagement at conferences, etc., are not patients, but policy makers, company executives and regulators. Even when patients are invited to the Patient Engagement conferences to speak, they may only speak for a specific disease. They may also really only be speaking for themselves. There is a danger that these patients may morph into professional patients, going from conference to conference, meeting to meeting, and may no longer be representative of the patients in the trenches.
The question of who speaks for the patient, is an ongoing dilemma that companies and regulators, and even patients must grapple with. There is no standard patient. The truth is that if you want to be represented as a rare disease patient, or a parent with a child that has a rare disease, you are going to have to make sure that you get involved in the drug development and/or regulatory review process in any way that you can for your disease area.
We at Rare Diseases Patients First! are seeking to provide the information that will empower you to engage in the areas that you are able to make a real contribution. We are very cognizant that the information provided must be useful. We are aware that there are many websites now where patients with rare diseases can share notes and war stories, and hopefully help each other in managing their rare diseases, or their childrens’ rare diseases. Some of that process, by necessity, involves trial and error. Because Rare Diseases Patients First! has the depth of knowledge about the pharmaceutical industry and the regulatory processes, we believe that much of the trial and error component is taken out of the equation. We can provide useful information that should provide the tools needed for engagement in the areas that patients and parents feel it is appropriate to engage.
The Rare Diseases Patients First! considered the topic of patient engagement during the last Webinar in April. We heard from Dr. John Whyte at the FDA about the initiatives to engage patients in the drug evaluation process. We hope to bring Dr. Whyte back soon as a speaker so that we can explore the topic of patient engagement with him in more detail.
The next Webinar will be held on the 25th of June 2015. We will be hosting a guest speaker. The guest speaker will be Dr. Sangeeta Jethwa. She is Patient & Population Director, Rare Diseases, Roche Pharma Research & Early Development, Roche Innovation Center (Basel,Switzerland). We will hear from Roche on their thoughts around patient engagement, how they approach this, and how this might develop in the future. They also look forward to hearing your comments on how you would like to engage with them.
To register for the Webinar on the 25th of June, please send an email to Dr. Speid at firstname.lastname@example.org with RDPF in the subject line. The registration details will be sent by return.