At the Annual Meeting a few weeks ago, and on the feedback forms that we received, a lot of people made note of how hard it is/was to follow along with all the acronyms that those of us immersed (in any subject) tend to throw about. This is especially true for people new to a group, feeling unfamiliar with the meaning of lots of new terms. It seemed clear that many people are still wondering which IPPF program is most appropriate for their level of engagement with the Foundation and the “cause”.
There are so many “jobs” to do in building a better experience for P/P patients: Someone needs to tell doctors about the symptoms and treatments; someone needs to go show their wounds to interns and dentists; someone has to write newsletter articles; someone has to offer their expertise with different medicines and share their wisdom; and someone has to accept help from those that have also suffered in order to get better themselves. What can you do, that fits your needs and upholds the value of service and compassion for others on your path?
Know your Acronyms!
PPR: “The Registry” Here, P/P patients submit data on their disease activity and medicines. The form is online and you can fill it out from home at any time. It takes about 15 minutes, only once. So it’s super easy in terms of what you have to put in. The catch (of course there is a catch to a sentence that starts with “super easy”) is that we need AT LEAST 1,000 people to do this in order to have enough data to influence any argument for research or funding. Finding 1,000 PEMPHIGUS/PEMPHIGOID patients isn’t so easy — as you well know! We have a “job” that ONLY YOU can do. We need you to put your data in. Everyone of you. Everyone.
If this resonates with you and you have the energy to do more, then get the word out to every other P/P patient there is… ask your doctor if they will forward a link to the registry to others they treat; send requests to Dermatology Chairs at teaching hospitals; ask/remind your Facebook® Friends and encourage your Forum and Discussion Group buddies. If you have other ideas share them too, growing the impact even further.
HMP: “Health Management Program” The HMP is an over-time series of surveys of your current state on that day, combined with the opportunity to discuss these experiences at the time, with a Peer Health Coach (see next column) who is there to advise you (and maybe even nag/inspire you) on advocating for your own best care with the best information currently available. They can weigh the pros and cons of different options, suggest everyday soothing strategies and forewarn you about things to be on the lookout for. They also will always stand by in helping you get the most out of your time with your doctor — or suggest a better one. This program is a huge investment of the patient’s commitment, the Coach’s dedication and the mission of the IPPF. If you need better care, the HMP team is here to make it happen.
PHC: “Peer Health Coach” Peer Health Coach refers to another P/P patient who goes through an extensive training process — on disease processes, medications and side effects, privacy security, and interpersonal motivation and support. This demonstrates the HIGHEST level of commitment that one can dedicate to the service of other patients, and is the culmination of moving through other patient support opportunities such as:
Peer Support Coach: You are interested in learning more about this disease, medicines, and are willing to do a little bit of online training on medical privacy and recording data about calls to help patients to the right resources.
Support Contact: (Local or Disease Specific) Want to make yourself available to talk with someone who’s seeking support in geographic area? You may offer to allow the IPPF to give out your name, email or phone number to others who want to talk to someone. It won’t happen a lot, but you would then be relied upon to reply to this patient in need.
In the Health Management Program, rest assured the resources of knowledge, experience and expert doctors work to prepare you to handle your health better. When you enter your data in the Registry, you help others handle their health in the future by providing researchers and front-line doctors information to pursue better treatments. Anything in-between just makes the support of our net wider — we appreciate you doing what you can.