Patients needed a resource page to look for MPN Specialists in the U.S. Many newly diagnosed patients think the first hematologist / oncologist they see is a specialist because they are treating their MPN.

1. Advocacy Session 4
Best practice in patient advocacy
#MPNHZ18
FINDING AN MPN
SPECIALIST
David Wallace, MPN Cancer Connection (MPN-CC) –
PV Reporter, United States

2. Patients needed a resource page to look for MPN Specialists in the
U.S. Many newly diagnosed patients think the first hematologist /
oncologist they see is a specialist because they are treating their
MPN.
Since they have never been to this kind of doctor, new patients
don’t realize what constitutes a specialist with a focus on treating
MPNs.
Here is a link to the MPN Specialist Page -
https://www.pvreporter.com/mpn-specialists-cancer-treatment-
centers/

3. Implementation (I)
One of the top questions I see in the Facebook groups, is “where
can I find an MPN specialist?” I created this page early this year
to meet that need. It has become the 2nd
most visited pages on
the PV Reporter website. Demonstrating the need was there.
I began working on this project December 2017, beginning with a
discussion with my doctor. I explained the project I had planned
and asked if he would review our initial list of MPN specialists.
I also contacted (2) patient advocates and asked for their
assistance. All parties agreed to help out. We were ready to roll.

4. Implementation (II)
I began by obtaining a broader list of hematologists from another
organization serving the blood cancer community. I asked one of
our patient advocates to review the list and remove any doctors
who were not specialized in treating MPNs.
I brainstormed my own list of all the MPN specialists I could think of
and asked my other patient advocate helper to do the same. I
reviewed the NCCN Guidelines for Patients with MPNs (MPN-CC
endorsed) and looked at the Panel Members and pulled more
doctors to add to the list –
https://www.nccn.org/patients/guidelines/mpn/

5. Implementation(III)
I combined all of the resources and lists into one comprehensive
list that includes the following:
- State, Doctor’s name and their Cancer center
- My doctor did a final review of the list and added several doctors
that we were not aware of. Then the list of MPN Specialist was
published.
Key Challenges:
- There was another “patient recommended” list of hematologists
that had a firm footing, but was not a reliable resource.
- Getting patients to understand the benefit of a “doctor
reviewed” list vs a “patient recommended” list.
- Vetting the list to verify that each doctor was a true specialist.

6. Result and Impact:
Now when a patient asks for a recommendation in their area, the
Facebook Group leaders refer them to The MPN Specialist Page.
Their stamp of approval was needed to get this resource list into
a wide distribution of patients around the U.S. When I send out
newsletters and do cross-promotional activities with partners,
the list reaches more patients in need.
As the list gets updated (weekly), I post a link to the page in the
Facebook groups thanking patients for their help and asking for
additional recommendations. This has led to a community
support for growing the list and making it an important reference
for the MPN community.

7. Conclusion and recommendation:
Be sure to engage the help of other patients in your community and
ask for support from an MPN specialist in your country to review
the list and offer recommendations.
Read abstracts and see what doctors are doing clinical trials and
research on MPNs.
This has been a rewarding project for me personally, as I know it is
making a difference and more patients are seeking the help of a
true MPN specialist.
DAVID WALLACE, david@PVReporter.com