This is the face2face part of Bootcamp21
11th- 13th February 2022
The original event in December was replaced by a series of online sessions due to COVID. This f2f event builds on the work conducted during the online sessions.
Bootcamp21 focuses on why and how MPNE engages in research. And obviously, on what we are concretely going to do next!
You will find the information to the first part here
Why this bootcamp
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- we still loose half of our people with Stage 4 Melanoma. More on patients' engagement (rather than patient engagement) here
In Bootcamp21 we will be using tools- some old, some new- to look into what research has to deliver in order to be meaningful for Melanoma patients and what we as community can concretely contribute to that.
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.
11th-13th February 2022, Berlin, Germany
11th- 13th February
Please note that this is a typical MPNE program: the frame of Friday lunch- Sunday lunch is fixed, anything in between is open for change- THIS IS NOW THE FINAL.
Please bring a laptop/ iPad.
Friday, 11th February
arrive till Friday mid-day
decide whether you want to drop off your bag at the hotel first or directly come to the venue- leave about 30' travel time between the sites.
14.15 we are leaving to the Illumina Solution Centre
do not forget your vaccination certificate
15.00- 17.00 visit to the Illumina Solution Centre, places as assigned.
18.00- 19.30 Working Session: Mapping a patient-centric research ecosystem
20.00 dinner at work space
return to hotel
Saturday, 12th February
8.30 we are leaving the hotel, breakfast at the work space
9.30- 11.00 Working Session: Mapping dependencies in the research ecosystem
11.00- 12.30 Working Session: Developing partnerships in research: partnership canvas
12.30 lunch at the workspace
14.00- 15.30 Multi-stakeholder collaborations and the Pentahelix approach: tools to facilate effective multi-stakeholder collaboration
Viktoria Asplund, Innovation leader at Vision Zero Cancer
15.30- 16.00 coffee break
16.00- 19.00 The BIG discussion: bringing it all together. Including case study: A series of unfortunate events and our non-negotiables!
20.00 dinner - place to be determined
return to hotel
Sunday, 13th December
If you don't do it, no one will. This is the day to focus on concrete next steps: what will we in MPNE do to get the research we need? And how will we know it's working?
9.00- 10.30 Impact assessment
10.30- 11.00 coffee break
11.00- 12.30 You got the job! Next steps for MPNE.
12.30-13.00 bringing it all together- conclusion
13.00 lunch and departure
A playbook for research strategy
Due to COVID, we cannot meet as before. To make it easier for others to use our tools, we will collect them in a playbook and share.
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? What are our non-negotiables? How do we know we are achieving anything? What can we as community contribute what no one else can?
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?
We started this work in November, now we will only re-visit and take it up later to complete.
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!
We started this work in November, now we will only re-visit and tcomplete, time permitting.
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?
11-13th February 2022
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. Which will be the topic for our case study in February, most detail to come shortly!
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.
Friday/ Saturday/ Sunday
What do we stand for? And what will we never do? Clarifying our non- negotiables during the weekend.
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 €400 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 Germany and back and are required to abide by all respective local rules, including in transit destinations.
Travel to Berlin
Up to you to organise. Reimbursement after the workshop up to 400 EUR, procedure as usual: you will receive a form where to submit your expenses and receipts. No receipt = reimbursement.
Estrel Hotel Berlin, Sonnenallee 225, Neukölln, 12057 Berlin, Germany
DIFFERENT FROM BEFORE COVID Please book your room directly at the venue and make sure you can cancel as long as possible.
Liane 1, Karl-Marx Str. 17, 12043 Kreuzberg, Berlin
20min by public transport or 30 min walk from the hotel.
We will have breakfast at the venue, not the hotel.