MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe
13th- 15th March 2020
Hotel Marivaux, Boulevard Adolphe Maxlaan 98 B-1000, Brussels
Why do Uveal Melanoma patients need guidelines?
Our network has noted with great concern that Uveal Melanoma care shows considerable inconsistencies between and even within European countries.
Patients benefit from the implementation of high quality, evidence-based guidelines as they help to ensure that all patients receive equal and evidence-based care. Currently, there are several ongoing efforts for national as well as European guidelines for Uveal Melanoma which we hope will improve care for patients with Uveal Melanoma.
What have we done so far?
Within MPNE, we have been mapping a typical Uveal Melanoma patient pathway, identified critical areas for care failures and drafted and revised a draft version for Essential Requirements that any Uveal Melanoma guideline should cover to ensure optimal patient care.
Why an MPNE consensus meeting?
As a mission-driven network, we in MPNE work according to shared principles and in subsidiarity. Be believe that local priorities and initiatives are the key to culturally appropriate and relevant support for patients and most accurately reflect actual local need.
Please note that we are European definitely not in a political sense, rather some vaguely geographic sense but above all, united by the the tradition of universal healthcare systems.
MPNE network members therefore only represent themselves but cannot speak for the network. At Krusenberg 2019, MPNEhubs highlighted the need for a mechanism to arrive at and formulate consensus across the network.
The MPNE consensus meeting on Essential Requirements for Uveal Melanoma Guidelines will be MPNE's first consensus meeting and help us develop a solid methodology how to build consensus in our network.
Why do we need an MPNE consensus meeting on Essential Requirements for Uveal Melanoma Guidelines?
We as Melanoma Patient Network Europe want to ensure that
- All aspects relevant to European Uveal Melanoma patients are appropriately covered in Uveal Melanoma guidelines
- Guidelines are developed together with an implementation strategy to ensure broad, consistent and timely adoption for maximal patient benefit.
What will the MPNE consensus meeting do?
The MPNE Consensus meeting on Essential Requirements for Uveal Melanoma Guidelines will formulate a consensus in the European Uveal Melanoma patient community on
1. Essential topics that the patient community wants to see covered in any Uveal Melanoma guideline, the Essential Requirements
2. Critical measures for broad, consistent and timely adoption of any guideline and
3. A complementing MPNE advocacy strategy.
What will the MPNE consensus meeting NOT do?
The purpose of the MPNE Consensus meeting on Essential Requirements for Uveal Melanoma Guidelines is to formulate which aspects ought to be covered within any Uveal Melanoma guideline, NOT to write a guideline.
Which difference will the MPNE consensus make to the Uveal Melanoma patient community?
A consensus developed by experienced MPNEhubs according to sound methodology and scientific principles will provide the European Uveal Melanoma patient community with a support tool for input into ongoing guideline processes. As opposed to an individual patient perspective, a consensus captures the diverse thinking of a group.
Selection of a consensus faculty based on relevant expertise will ensure high quality work. Iterative consultation processes with the wider network will ensure that no perspective is missed:
1. The consensus draft itself is the result of a) a Uveal Melanoma patient pathway mapping conducted in our network and b) 4 iterations after discussions that took place at different MPNE meetings between November 2018 and January 2019.
2. The preparation phase in February 2020 to the meeting including a) the identification of knowledge gaps and b) literature research will be open to any network member with interest. Contributors will be personally identified to prevent undue influences.
3. The consensus itself will be reviewed by the network and appropriate comments integrated into the final version before publication.
Who will be at the MPNE consensus meeting?
MPNE faculty- MPNE advocates selected based on their personal relationship to Melanoma, in particular Uveal Melanoma, their advocacy experience and activity on a European level. Details can be found under 'faculty'. The meeting will be closed.
What else are we planning?
We will disseminate the results of the consensus meeting as well as the methodology of how we reached the consensus.
The consensus will be forwarded to all ongoing Uveal Melanoma guideline initiatives.
We will develop education for patient advocates around the Consensus.
And we are waiting to hear your ideas and suggestions :-)
As always, as volunteer advocates, time is our most valuable resources. We will therefore split work into the smallest possible units and work in bursts and spurts to limit the burden for every individual.
MPNE consensus I
Last update 19th January 2020 BR