Edmonds, September 19th, 2007
Feedback meeting in Basel, CEO of Novartis.
The meeting with the CEO of Novartis, Dr Vasella, was very successful. He was genuinely engaged and interested in our work; he was aware of our progress, and he asked me to convey to all of you his gratitude for the important work that the TMF team does for the benefit of patients worldwide.
I brought to him the poster that the patient from Malaysia designed. He was visibly touched and happy. I have posted to the FTP site a photo taken of him, Nataliya, Stephanie and myself with the poster.
We also brought a smaller version of the same poster and gave it as a present to Stephanie. You can find a photo of Stephanie opening the present in the same FTP folder.
Collaborating with patient groups
You may have noticed that in the last few months we have asked you to officially ask your local patient group to collaborate with us in a few projects, starting with the art contest and now the celebration of life on Max’ birthday and the upcoming initiative to give back to the community.
I would like to acknowledge that we have done it a bit abruptly and with short timelines. I apologize for that. It has become evident that as we form the patient groups, we share with them mission and goals. MaxStations have done a great job leading the groups and coming up with local initiatives and goals. Our goal for 2008 will be to give more emphasis to global initiatives and to give more time for introduction of projects to the patient groups. We will also strive to create a community of patient groups so they can share and communicate with each other and be part of a more global force. On the MaxStation side, I will ask that you please make introduction of global initiatives a part of your routine planning of any patient group meeting.
Max’s birthday celebration.- I would like to thank the entire team for your willingness to collaborate in this project. It is a “dream come true” for me! I would like to especially acknowledge Patty, MaxStation CAC, Nelia, MaxStation Philippines, Danielle and Susana, because they have put in so much work and have come up with a great outcome. Please watch for upcoming information and pay close attention to communications as time is short. I cannot wait to read about each celebration.
Initiative of giving back to the community – I am especially interested in launching our new initiative to give back to the community tied to the celebration of Max and the celebration of life. This initiative will be a great way to not only promote voluntarism, help patients and ourselves fulfill our life by helping others, but also to promote the work that TMF is doing around the world. The notion of doing this with all of you at a global scale is unbelievably amazing!
In Edmonds, Carly has brought our initiative to the Port of Edmonds (our offices are located very near the Port and the building is owned by the Port). We are planning to work with an artist who would donate his time and talent, and we are finalizing plans to give a public gift to the Port. The plan is for a bench situated in the waterfront, close to a children’s sandbox and facing the beautiful Puget Sound. This is a great way to become a more visible part of the Edmonds community.
Patients in Need of Care (PINC) , Patient Services
It has been amazing to see the growth of our Patient Services this year! We were remembering how 2 years ago when we decided to offer Erin the position of patient services manager, she was the entire department!!! Now a day it has become a very large and busy department and I think all of you now see patient services as an important part of your work. I think that PINC has helped us all see the great work we are doing beyond GIPAP.
Last year, in the entire year, we recorded helping 350 patients outside of GIPAP. This year in the first 6 months, we provided services to 1,000 patients outside of GIPAP. In the USA alone, we received around 450 requests for help in these six months.
For this reason, and because we believe if we had more resources we could provide better services, we are planning to make some changes: Nataliya will shift 50 percent of her efforts to patient services, AND we will bring in one new Program Officer for GIPAP. In total, GIPAP will acquire 0.5 FTE and so will Patient Services. Nat will keep her Eastern Europe work in GIPAP and the new person will become part of the India team. It is really very exciting to see how fast our services are growing and what a great difference we are making for patients with blood cancer worldwide. We are actively searching for our new team member and hope to have her/him on board sometime in October.
New indications for Glivec.
As many of you know, Glivec has been approved in a few countries for a handful of orphan diseases, including Ph+ALL. The Novartis Global team and us have been working hard to find the best way to incorporate these new indications to GIPAP in a country by country basis. The issue has been complicated by the rareness of the diseases, difficulties to diagnose and other considerations. We are finally close to open the first few countries to PH+ALL. The first tier countries are Thailand, Philippines, Mexico and the Axios countries. We hope to open officially these soon.
We are always striving to take our work to a higher level both internally and in our collaboration with Novartis. As Stephanie and her team are busy promoting GIPAP in global conferences, we thought important to ask for feedback from physicians regarding program changes. We are preparing to launch a very short (3 questions) survey to physicians from PATS, asking for satisfaction related to the EZ re-approval process. Angeli is heading this project; she will follow up with specific information. This is coming soon, watch for details in the near future!
Two PATS related upcoming projects
We are working on two projects to make our daily work more efficient: 1, a worksheet for MaxStations to enter re-approvals (similar to the contact worksheet), which we hope will facilitate entering many re-approvals at once; 2, we have noticed that the weekly re-evaluation request email with the long list of patient names is posing a problem at many levels. We are working on a plan to REMOVE the list of names from the physician re-evaluation requests. (Wow, this is a radical idea!). The plan is to remind physicians of the number of patients needing re-approval and to ask them to go to PATS and enter the information. Parallel to this, we will be prepared with an easy way for MaxStations and POs to generate a spreadsheet that can be forwarded to a physician if this physician clearly cannot log onto PATS. We will also work on a case by case to find solutions for physician to have better access to internet. We plan to do this soon as well; the list of patient names in the re-evaluation requests is just not working at all.
Last but not least, the future: confidentiality and privacy practices
In the last few months it has become evident that we need to start to pay closer attention to our policies regarding patient confidentiality and our privacy practices. This issue has many ramifications; from the way we handle photo taking and use of photos for promotional materials and website stories, to more complex things like SAE reporting. We have just started to look into it, but everyone needs to know that in the next few months, and probably all through next year, we will be tightening up our policies. This will mean asking patients for permission to share information and photos AND tracking this consent. More on this to come; we will provide a forum to discuss this issue, through TCs and or skype. I am excited to tackle this topic as it only makes our organization more sustainable and our work more valuable.