Bootcamp21
Research Strategy

Face2face event postponed to

11th- 13th February 2022

due to COVID.

Online sessions on

Friday, 3rd December and Saturday, 4th December. Details below 

 

This workshop is how to move from a reactive - waiting to be asked- to a proactive involvement in research.

We will test different Design Thinking tools to identify what type of research we need. And then obviously, how to get it.

The goal is an informed research strategy for us as MPNE but also for everyone to be able to work out their own. We will therefore summarise the tools in a playbook for research strategy! 

The person I worry about

Friday, 3rd December 
3-5pm CET
online 

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 will look at whom we worry about- and why. What are the research problems that we need to see addressed?

Meeting format

Zoom

Miro for the mapping 

Patient pathway

Saturday, 4th December
10- 12pm CET
online 

Seeing 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! One of the advantages of working online! 

Meeting format

Zoom

Miro for the mapping 

Who's who
in a patient-centric research ecosystem

Saturday, 4th December
3pm- 5pm CET
online 

Screenshot 2021-11-16 at 16.52.01.png

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? 

Meeting format

Zoom

Miro for the mapping 

What's next?

Face2face meeting 
11-13th February 2022

Study case 

A series of unfortunate events

details to come soon 

 

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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! 

Have you been one too many times

 

pulled into a research project last minute 'because we need a patient' and felt like a literal tick box?

asked to write letters of support for research projects you weren't even shown?

joined research projects just to find out that there was expected work but no budget for you?

been lumped in with 'communication and dissemination' though you have no background in either and frankly, aren't sure what you are doing there?

been asked to recruit from your community for surveys or clinical trials without having any chance to influence these?

been invited to 'co-creation' activities just to arrive and find out the agenda was set, the frame was fixed and the result, well, was clear from the get-go?

been told that 'this was too complicated for patients' without anyone even bothering to find out what your background was? 

If yes to any of the above-

this Bootcamp is for you.

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Research Strategy

Why Bootcamp21?

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. This workshop will now look into how we can proactively ensure that research delivers what patients need.

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.

And as always, we want our work to last beyond, so we will summarise our favourite tools in an MPNE research strategy playbook.

Screenshot 2021-11-07 at 04.28.13.png

If we don't do it, no one will.

Already today, patient organisations can be partners in most European and national research projects.

 

Our MPNE meetings are great opportunities for different stakeholders to meet in a neutral space and discuss- and have already resulted in research and other collaborations.

Our network is often approached on how to involve patients in research- and frankly, we don't have a good answer.

There is no established way of 'how to do this right'. Best practices are either only recommendations- or written by the involving side from their perspective, not by our community.

 

We can't blame others for not being able to do what we can't define ourselves either.

And it's pointless to wait for that 'invitation to the party' while all we have to do is to show up.

Time to get to work.

'You could think they deliberately keep us busy with irrelevant things
to make sure we don't focus on what really matters to patients'
                        G. Spurrier, MPNEcore 

                                      

new
Date & Place

Bootcamp21

11th-13th February 2022

Berlin, Germany 

OLD Program
CANCELLED

DDR museum Berlin

New program for 11th- 13th February to come shortly

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 until communicated as final as we accommodate last-minute suggestions and ideas. 

Please bring a laptop/ iPad.

 

Friday, 3rd December

arrive till Friday mid-day

13.00- 15.00 Welcome and introduction, address to be shared 

15.00- 17.00 visit to the Illumina Solution Centre, places are limited  

Atrium Tower, Eichhornstraße 3, 10 785 Berlin, Germany

return to the hotel

18.00- 19.30 Patients first. Working session I

20.00 dinner 

Saturday, 4th December

 

9.00- 11.00 Patients first. Patient Pathways: building on prior work, we will map pathways for cutaneous Melanoma and update the one for uveal Melanoma (volunteers needed for mucosal, acral, paediatric and ultrarare please!)

11.00- 12.30 Solutions not problems. Mapping the research ecosystem Part I

12.30 lunch

14.00- 15.30 Solutions not problems. Mapping the research ecosystem Part II 

15.30- 16.00 coffee break

16.00- 19.00 Case study: solutions for our people out of options

Building on a real-world example, develop a holistic concept from research to patient benefit spanning the entire research- translation- implementation and scaling continuum  

20.00 dinner 

Sunday, 5th December

If you don't do it, no one will.

9.00- 10.30 You got the job! Action planning for MPNE 

10.30- 11.00 coffee break

11.00- 12.30 Working session on  iTOBOS , one of MPNE's Horizon Europe projects

12.30-13.00 bringing it all together- conclusion and next steps 

 

13.00 lunch and departure 

Small Strokes

What's a playbook for research strategy?

We have already used the patient pathway and other 'thinking tools' to systematically understand the challenges of our community.

The research strategy playbook will now collect tools that help us get from problems to solutions: what type of research will we need in Melanoma?

And what can we do to get it? What can we as community contribute what no one else can?

Participation

 

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. 

COVID

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.

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.