From J D Faccinetti co-founder – Unwanted surveys, polls, unsolicited robocalls, panels, emails, and text messages seem to be the order of the day, not to mention the unrecognized schemes always lurking on your phone and other devices. From politicians to marketers to service providers, everyone, it seems, wants to hear from you, inundating our communication and entertainment devices, infringing on our privacy, and trying our patience. Our opinions are in demand and, more than ever before, everyone wants to know how we think and what we do, with as much detail as possible.
Unfortunately, this flood of inquiries doesn’t appear to be ending anytime soon. Privacy is a thing of the past. We are being asked by everyone who has a stake in our wallet to “be engaged.” I get it, and it isn’t very pleasant!
However, a more salient point is a significant proposition that examines if being engaged as a patient or a consumer is a good thing. There are a few factors to consider. In my opinion, the answer depends on who’s asking you to engage – that is, do you trust the person or organization asking – and who’s benefiting when you participate? There are important considerations here: does the fact that I share my knowledge, experiences, and opinion benefit other people? Can I help someone else by being engaged? Can I contribute to the universal understanding of a disease state, and can that knowledge then be used to make life better for people with similar problems?
Consider then the question posed in this article’s headline about engaging in a discussion group, answering a survey, or participating in an opinion panel about our experiences with a disease. Joining in a new drug trial, for example, is an action that can benefit many affected with a disease, particularly with a rare disease, where finding enough people for an adequate sample is very challenging. Drug companies and other stakeholders, like the FDA, for example, are all making a concerted effort to bring patients’ opinions and experiences to the table and use that patient insight to improve all aspects of care, from drug design to distribution to access. The upcoming FDA Acromegaly Community PFDD meeting is a perfect example. None of these benefits are possible unless patients get involved.
So, let me tell you about a few things to consider if you are willing to lend a hand:
Sign up for a Clinical trial. Clinical trials are listed by condition, and you can filter them by those who are recruiting, or enrolling by invitation, or active but not recruiting. A search for acromegaly listed 23 studies currently recruiting. For Cushing’s Syndrome, the count was 24 presently recruiting. Read more and search for a trial here.
Check out the resources available and send your opinions and comments. Pharmaceutical companies have information on their specific trials on their websites, and many have particular websites published for patients with tools and resources. These are very helpful and provide feedback mechanisms on their websites where you can comment. PWN has a list of these resources, which you can see here. Some companies have developed websites to aid patients in the recruiting process making it easier for patients to engage in a study.
Sing up for a study. This is an example of a cohort study named “Macro Registry” – The Management of acromegaly registry to better understand the acromegaly burden. This is a study designed by the pharmaceutical company Chiasma to learn more about your medical condition and better understand how it affects your life. This project offers the opportunity to participate in the research by providing real-life information on acromegaly effects and its treatment on patients’ day-to-day lives. If you’d like to get more details, you can go to macroregistry.com or email firstname.lastname@example.org.
Join a support group. Joining a patient advocacy/support group is an excellent way to offer your experiences for the benefit of all. You can find a list and links to advocacy groups by clicking here. Leslie Edwin and Jill Sisco are two amazing people doing tremendous work for their respective patient communities in Cushing’s and acromegaly, and they need your feedback and support.
And finally, share Pituitary World News’ content. Pituitary World News offers you a platform where you have the opportunity to get involved, comment, ask questions, and give us your opinion. Your comments reach other PWN readers, who, in turn, share and react. We are all continually learning from this communication dynamic how to be better at getting the word out and making a difference.
Your opinion matters. If you don’t play, we don’t learn.
Stay tuned for more opportunities to get involved.
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