Two recent webinars reminded me that I would really like to see medical-educational webinars (for non-health-professional audiences) sponsored more by patient groups, rather than by pharma. First, patient groups have a better idea of what patients/caregivers want/need to know about than pharma does (or can find out easily by engaging directly with patients/caregivers). They can also vet the speakers better with respect to whether they’re patient-focused. I attended one pharma-sponsored webinar some years ago that was downright insulting insofar as the speaker, who was a confirmed expert on a general health topic (not the biochemistry or orthopedics of XLH) but had zero apparent expertise with treating XLHers, knew nothing about our unique treatment needs, and had a tendency to blame the patient for things that are not, in fact, within our control. I doubt very much that a patient group would have allowed that person to speak to its members, or if the speaker had somehow slipped through their vetting, they would have realized their mistake and apologized profusely. Pharma did not.
Second, whether fair or not, anything presented by pharma is tainted by the presumption that it’s just advertising, a hard sell to a captive audience, rather than education. As a matter of self-preservation, we’ve learned to be skeptical of any materials produced by a corporation, including pharma, assuming that they will exaggerate the benefits of their product and minimize the down sides. (I’m not saying that’s true in any specific instances, or of any particular pharma company, just that it’s a natural reaction from a public that’s drowning in advertising and slanted pitches, and that has been burned often enough that we now view everything with skepticism.)
I happen to think that more continuing medical education should be organized by patient groups too (relying on qualified experts to do the actual presentations), but that’s a topic for another day. For now, I’d like to focus on two programs about XLH, both intended for patients/caregivers, one offered by a patient group and one by pharma. The programs both have relevant topics and excellent speakers, but I can’t help thinking that the patient-group-offered one is likely to find more traction with patients/caregivers than the pharma one.
The patient-group event happened yesterday, with Dr. Kassim Javaid talking about “the complex relationship between XLH and Parathyroid hormone.” It’s sponsored by XLH-UK, which, along with Dr. Javaid’s expertise, gives potential viewers a lot of reassurance that it will be patient-focused and reliable, worth our time, and with no obvious sales pitch involved. It’s also a topic that I haven’t seen addressed anywhere else, suggesting that it’s something that the patient group realizes is of interest to its stakeholders, but not something that pharma recognizes as an issue for patients/caregivers. (I believe the presentation will be recorded and made available later, and will share the link if/when it’s available.)
In contrast, next week (April 28), there will be a webinar offered by pharma on the topic of XLH dental issues. (There are two sessions, and you can sign up here for 7:30 pm ET or 9:30 pm ET.) It is an important topic, but (unlike the parathyroid issues) it’s been addressed any number of times in any number of settings. I feel a little guilty saying that, because the speaker, Dr. Juan Yepes (dentist AND doctor), is really outstanding, and I encourage you to attend the webinar even if you think you already know everything about XLH dental issues. Dr. Yepes is incredibly knowledgeable and patient-focused and so good at communicating the information in a way that’s easy to grasp. (I also recommend this video from his appearance on a podcast for dental professionals. Even though he’s talking to dentists in this video, the information is presented clearly and simply enough for non-doctors to understand.)
Bottom line: I think this particular pharma-offered webinar will be excellent, but I worry that people who would benefit from it will be turned off by thinking it’s just a hard sell by pharma, and will miss out on a great presentation. Which is, as noted above, a large part of why I think that patient-focused webinars benefit from being organized, not by pharma, but by patient groups, like XLH-UK.
Administrative note: I’m doing a bunch of much-needed work on my house, and have contractors constantly bopping around the place with hammers and sawzalls and loud music and [fill in the blank with the worst distractions you can imagine], so most of my brain cells have decided to shut down for the duration. It’s likely to continue for the next week or two, so I’m planning to skip the blog/newsletter next week (April 29) and hope to have enough working braincells again in time to return on May 6.
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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