The work continues
13th- 15th May 2022
Research remains a priority for us in Melanoma. How can we get more strategic, better research faster?
Bootcamp22 will focus on our work on research partnerships: what do good research partnerships look like? How does one negotiate them? Plus, as always, look at some recent developments. Point here is to carry on the work until we hopefully can go back to 'normal' meetings in autumn!
You will find information on how it all started here
and how it then continued here!
Why bootcamps for reseach strategy
Research is critical for solving Melanoma.
Many of us are already involved in research projects and the opportunities for us are increasing. So far, our involvement has been mostly reactive- we were approached by others.
However, we are not in research to be engaged. We engage in research to find solutions for our community as we still loose half of our people with Stage 4 Melanoma. More on patients' engagement (rather than patient engagement) in research here
In this series of Bootcamps we will be using design thinking tools- some old, some new- to look into what research has to deliver in order to be meaningful for Melanoma patients.
We will also look into how we can make best use of our expertise and experience to get more strategic and better research.
We want our work to last and be of value to others, so we will summarise our favourite tools in an MPNE research strategy playbook.
13th- 15th May
Please note that this is a typical MPNE program: the frame of Thursday/ Friday till Sunday lunch is fixed, anything in between is open for change.
Please bring a laptop/ iPad.
Thursday, 12th May
arrival- it seems hard to arrive on Friday morning, so please arrive on Thursday, we catch up over dinner and start working on Friday morning.
Friday, 13th May
8.00 Breakfast at hotel
8.30 Walk to the Champalimaud Foundation (about 25 min, so bring your conference shoes ;-). The Champalimaud Centre of the Unknown itself is impressive, you can read more about it here .)
9.00 Session I Welcome and re-cap
Re-cap of previous work to make sure we don't duplicate:
1. what we need (the person I worry about, patient pathways)
2. who is needed to get it and (ecosystem mapping, something else we still miss)
3. how we get it (research partnership canvas).
Review of MPNE experiences of participating in research projects and applications: what have we learned? SaMoLo- wha worked well so want to keep it the same? What was great but not enough, so we want more of it? What was awful so we don't want to have that again?
12:30 Lunch at the Seminar room
13h30-14h30 - Cancer Talk- Clinical Seminar Champalimaud (open)
Cancer Mission Board, Beating Cancer Plan and European Cancer Research
Bettina Ryll, first EU Cancer Mission Board
14h30-15h00 - Coffee break
15h-16.30h - Workshop: research partnerships with patients
Location Library- we will go there together
17.00 Welcome drinks
Saturday, 14th May
8.00 Breakfast at hotel
8.30 Walk to the Champalimaud Foundation
9:00 Morning session
Meet the Human Colossus Foundation. Find out more about them- including how they got to their name- here.
Topic will be distributed- rather than de-centralised, let alone centralised- data models. Interesting and relevant on many levels- and highly timely, considering the EU's publication of the concept of the EHDS- European Health Data Space on May 2nd.
Introduction by Human Colossus: the model, general technical principles, feasibility
Discussion on required governance
Working through a concrete example: we will use the MPNE decision path on how to best help Melanoma cancer patients fleeing the war from Ukraine (we already have that in pseudo-code) to discuss what type of minimal dataset would allow us to do this even better.
11:30 Constanca will share some of her recent PhD work on patient involvement in research!
For the afternoon
Topic switch 1. understand what mutually benefical research partnerships look like and 2. practice negotiations.
Session on impact assessment of our engagement in research projects
An introduction to impact assessment in Humanitarian Aid
What can we learn from it for our work? Patient engagement in general?
Presentation of the draft impact assessment concept we have created for iToBoS for discussion. Capture recommendations where to go next
Research Partnership canvas
The partnership canvas we tested in Berlin has undergone a further round of iteration at the High-level event of the French Presidency for Civic Engagement in Missions on March 22nd and now, we will have tested it in the Friday session.
As long as it's fresh- what can we further improve?
- revisit the research partnership canvas
- develop new personas (we have 12 so far)
- re-define the patient/ patient advocate personas based on previous MPNE concepts
Get to know our consortium partners!
Lennart Jütte from the University of Hanover about their role in iToBoS
Work on the iToBoS research partnership canvas for the workshop at the annual iToBoS meeting in autumn
And if we got time, we will play a round of Win/ Win or No deal!
Negotiating partnerships as patient organisation: understanding secondary motives and benefits
19:00 Dinner- do as the locals do! Info on slack
Sunday, 15th May
8.00 Breakfast at hotel
8.30 Walk to the Champalimaud Foundation
9.00 Next projects
UMpact- our recent submission for Uveal Melanoma
Upcoming research opportunities: how do we ensure we only work on things that make a difference for patients, help us to develop our concepts and our community and are fun? Instead of the usual......
13.00 lunch and departure
13th-15h May 2022, Lisbon, Portugal
A playbook for research strategy
This research strategy playbook will contain tools that help us get from problems to solutions: which problems do we need to see solved? What type of research will address these? What can we concretely do to support? How do we get more true partnerships and less tick-box exercises? How do we negotiate successfully? What are our non-negotiables? How do we know we are achieving anything? What can we as community contribute what no one else can?
Currently, we are working on the section on research partnerships, together with other partners interested in the topic!
The person I worry about
We want research that makes a difference for Melanoma patients.
If there is something we know extremely well, then it will be what worries us. Starting with a systematic look at our community, we look at whom we worry about- and why. What are the issues that cause most concern in our community? Which of them need to be addressed by research?
Our way to find out what really impacts our community!
Placing the issues Melanoma patients face in context.
Mapping how Melanoma patients move through the system along their disease. This time, the focus will be on developing a Pathway for cutaneous Melanoma. Our colleagues from Uveal Melanoma will have opportunity to update theirs. And obviously, our mucosal, acral or paediatric colleagues will be very welcome to start theirs as well!
Long time in the making and iteration is key!
in a patient-centric
Starting with the end in mind- a patient-centric research ecosystem
We all know that papers don't cure patients. Many stakeholders are involved before a research finding has turned into patient benefit- who are these stakeholders, where are the critical transitions that need to be managed to avoid 'lost in translation' and where should we be involved?
We created the first overview in Berlin, now it is about reworking single sections and turning them into action!
Starting with the end in mind- also in research
The partnership canvas
work in progress
First tested in Berlin, then iterated in Paris at the High-level event of the French Presidency on Civic Engagement in the missions-
We got an improved canvas, a set of personas (12 in total so far) and a protocol, all availably under a CC BY-SA licence.
Personas need refinement and additions now, so we are working on the next version of it- actually 2. One for MPNE and one for iToBoS, the Horizon 2020 project MPNE is project partner in.
Tools help to structure thinking
A series of unfortunate events
A series of unfortunate events- precision medicine today
Currently ongoing: crowd-source feed-back of a systematic mapping of all uncertainties and issues that currently limit the potential of precision medicine for our patients whom all other therapies have failed. You can add your feed-back here!
Survival in Melanoma has considerably improved- from 5% at 5 years to over 50%. That still means that we are losing half or our people to the disease.
Precision Medicine programs are one of the few options left once all therapies have failed you- so it's time to turn a series of unfortunate into fortunate events.
Example of how to systematically capture and analyse issues around a topic critical to the Melanoma community.
What is the impact or our work? Was this worth our time?
Thinking about what we consider positive impact and how to measure it. We are project partner in the Horizon 2020 project iToBoS. One of our tasks is to evaluate the impact of patient involvement on the project. In this session, we will be discussing our learnings so far, what we as community consider success criteria- and how to measure these. Work in progress.
What do we stand for? And what will we never do? Clarifying our non- negotiables is critical for what we do.
WHO SHOULD APPLY?
We are looking for Melanoma patients, carers and advocates who are already involved in research projects or who have a serious interest to become involved in the near future. Please pay attention to the particular notes with regards to COVID.
Not quite you but still interested to attend? Please contact us.
HOW DO WE SELECT?
As always, participation is upon application only. First and foremost, we select based on motivation: so what do you hope to learn this time? And how do you intend to use it for the benefit of the larger Melanoma community?
WHAT DOES IT COST?
Accepted participants will receive free registration and full-board accommodation for the 2 nights of the meeting. Extra nights are at participants' own expenses.
Travel needs to be arranged for by participants themselves but will be reimbursed up to the maximum amount of €450 for economy/ 2nd class travel after full attendance of the conference. Please look for the best deals and keep the original receipts of your bookings.
Cannot afford to pay ticket upfront? Please contact us.
No attendance, no receipt = no reimbursement.
Unfortunately, we are dealing with 2 challenges at the same time: Melanoma and COVID.
Upon popular request by our Melanoma community, we are now slowly going back to meetings in real life, obviously respecting all protective measures in place. The meeting location has been chosen as it offers COVID provisions.
Attendance of our face-to-face meetings is therefore restricted to participants who are fully vaccinated with one of the EMA-approved vaccines, that means 2 weeks past the last required immunisation, and who are in possession of a vaccination certificate that is valid in the EU.
Please note that you will have to provide a valid vaccination certificate in order to visit the Illumina Solution Centre on Friday.
Participants are responsible to check the travel requirements from their respective country to meeting site and back and are required to abide by all respective local rules, including in transit destinations.
Up to you to organise. Reimbursement after the workshop up to 450 EUR, procedure as usual: you will receive a form where to submit your expenses and receipts. No receipt = no reimbursement.
HOTEL JERÓNIMOS 8