What happened to the lazy days of summer! After slicing and drying almost 300 pounds of tomatoes from my garden, it is a happy frenzy when I get to the IPPF office – which is, at least, air conditioned. Will has been lifting the heavy weight of building an automated system that delivers our direct patient support in a much more streamlined way. Now you can call your Entraîneur de santé par les pairs directly, no matter where they are. In addition, we have added mechanisms to ensure timely follow-up with requests that come from the website, Forums, phones, or emails, and even better, to request, from those helped, feedback on our services and suggestions for improvements.
Part of this technology improvement has gone to strengthen our data registry. We now have, in just slightly over one year, 171 (as I write this) people surveyed through our Programme de gestion de la santé. This means that we have what is close to statistically significant data on the natural course of P/P disease and reliable evidence of treatment outcomes and side-effects. Finally we can provide that data (all de-identified and anonymous) to doctors to develop “Best Practices” standards for treatments. This allows doctors not familiar with treating P/P to have some confidence in the course of care they offer and, in the anticipated success of different options. Most importantly, having large scale information on your illness experience, treatments, outcomes and complications will allow the IPPF to more effectively pursue policy and discovery opportunities that improve treatments, outcomes and your quality of life. Watch for more news on the registry environment and your vital participation….having information from a large number of patients will optimize the accuracy of our insights and our effectiveness in illness advocacy. In addition, we can give data to researchers to identify trends and potential mechanisms to manage or cure the influence of those rogue antibodies.
We still need your help. Having 500 patients surveyed provides a much richer set of data points to enhance confidence in the choices that doctors and researchers make about fruitful areas of pursuit (we have over 3,500 patients that CURRENTLY use our services). We need your data. To this end, Will, again is working his wizardry to put our survey’s online so that even people who do not want or need the added comfort of a personal “Peer Health Coach” can still contribute to this wealth of knowledge about these wildly misunderstood diseases. Please, call us or go to the website and indicate that you want to participate in the “HMP” Registry data collection to help advance a cure. You can request information at www.pemphigus.org/hmp.
For those of you who truly appreciate the opportunity to connect to a Peer Health Coach, we have expanded our program and now have numerous coaches, located across the country, including both men and women coaches and coaches with different forms of P/P – so you can always connect with what you need. All Peer Health Coaches are P/P challenged and have participated in and been certified by an outside training program to provide valuable P/P wisdom as well as advice. If you would like to talk with a Peer Health Coach, you may submit a request on the website, or call the office and choose Option 2. You will be provided a Coach based on your location and disease experience – you can always switch if you want — they will collect your data and discuss with you any areas of interest or concern.
We also especially need you to support the IPPF in 2009. The conference of P/P luminary medical professionals to define the “Best Practices” in treating this disease – which will help, literally hundreds of P/P next year alone – has a budget of nearly $25,000. The money will be spent to gather data, evaluate completed studies and to produce and publish a scholarly paper as well as provide the results to ALL of the practicing “main street” medical-dermatologists in the US. Heureusement, the IPPF has been honored in 2009 with a Matching Donation Campaign (see details on page 11) which allows every dollar donated this year to do twice the work and make twice the progress. We know this is a tough economy for everyone, but we are anxious to continue our momentum in making a real difference in the course of this disease; Please give what you can, or give again if you can.
After the registry contains robust numbers of patient data we have plans to implement a tissue collection bank to augment the data report with actual samples of blood, tissues, etc. — as the foundation for medical trials — more on that next time.
PS: Make plans now to join us in Philadelphia, PA April 30-May 2
for the 2010 Annual Meeting. And let us know if you have any
connections in Philly that could help make it a great(er) meeting!!