Krusenberg 2017 program

Melanoma Patient Network Europe Krusenberg 2017 LEAN ADVOCACY

Build. Measure. Learn. Repeat.

24th- 26th November 2017, Uppsala

MPNE Krusenberg2017 annual workshop for MPNEhubs

Location Krusenberg Herrgård Krusenberg 436 755 98 Uppsala Sweden TEL 0046-18 18 03 00 Coordinates GPS-koordinater Latitud: N 59° 44′ 8″ Longitud: E 17° 38′ 58″

hubs

Latitud: 59.73558245943259 Longitud: 17.649586782639698 X: 6625424 Y: 1603732 Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden Organising team Bettina Ryll, Gilliosa Spurrier Violeta Astratinei

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A very warm welcome to the 4th edition of our annual MPNEhubs workshop for in Krusenberg!

We are a network of people who are just not willing to simply accept what Melanoma does to our lives and the lives of the people we care about. We all want to make a real difference for Melanoma patients and we are only too aware that the problems are numerous.

Time is something that most Melanoma patients don’t have which means that we have to get from problems to real solutions fast.

As we all work as volunteers in our free time, our resources are also limited- albeit maybe not as limited as some might think.

Start-up companies share some of our concerns- finding solutions to important problems, limited time, limited resources.

The Lean Start-up movement has adopted some principles from the ‘lean’ or ‘agile’ methodology for start-ups- and with this Krusenberg workshop, we will now see what we can further adapt from that for us- Lean Advocacy. And as we need real not just theoretical solutions, we will directly crash-test it on real Melanoma problems.

So we are looking forward to yet another unusual MPNEhubs workshop and seeing you in Krusenberg!

Bettina, Gilly, and Violeta MPNE MPNE Krusenberg 2017

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program version 17th November

Friday, 24th November 2017 13.00- 14.00 Check-in and Registration 14.00- 15.00 Welcome and elevator pitch introductions Bettina Ryll and all 15.00- 15.30 Session 1 – Workshop introduction Andrew Evans, Otto Freijser and MPNE Why should we as Melanoma advocates care about ‘lean’ processes?

15.30- 16.00 Coffee 16.00- 17.00 Session 2- We get started!

Team present their advocacy project ideas 17.00- 19.45 Session 3- From idea to reality: Step number 1 Turning an idea into an experiment with help of the Javelin Board Session 4- Who is affected?

Constituent/Stakeholder Discovery Teams plan and run their first experiment 19.30 Reception tbc 20.00 Dinner Continue the discussion with your team over dinner

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Saturday, 25th November 2017 8.00- 9.00 Breakfast 9.00-10.30 Session 5- As much as necessary, as little as possible What is a ‘Minimum Viable Product’?

Teams run their first experiment!

10.30-11.00 Coffee 11.00 – 12.30 Session 6- Session 6- Lessons learned Analysis of first experiment and share results Team plan and run their second experiment 13.00 – 14.00 Lunch 14.30 – 16.00 Session 7- Pivots: continue or change direction?

Teams analyze second experiment and decide to continue or change the direction 16.00 -16.30 Coffee 16.30-18.00Session 8- Solutions not Problems.

Solution ideation- get to know a technique to generate solutions very fast Teams update their assumptions and prepare for their final presentation on Sunday

19.00- 19.30 Glögg och Pepparkakor Join us for a very Swedish tradition 19.30 Julbord The traditional Swedish Christmas Dinner

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Sunday, 26th November 2017 including advocacy session for MPNEhubs 8.00- 9.00 Breakfast Please make sure you check out 9.00- 10.30 Session 9- Stop- Look- Go Teams present their projects Discussion and next actions Summary for our network Which Lean principles apply to advocacy? Which ones don’t?

Synthesis of a ‘Lean Advocacy Concept’ for MPNE 10.30- 11.00 Coffee 11.00- 12.30 Advocacy session MPNE members only Ø Update about recent developments within MPNEnew meetings, growing network Ø Annual session- unmet need in the network Ø MPNE in 2018- annual conference, meetings, other opportunities 12.30- 12.45 Workshop Summary and Closure Bettina Ryll, MPNE 13.00- 14.00 Lunch and Departure

Safe travel home and we hope to see you again soon!

We rely on your feed-back to make events as relevant as possible for you- so please don’t hold back!

Reimbursement of travel expenses after the event against travel receipts and a completed reimbursement form. You will receive the reimbursement form and further details by email.

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faculty Andrew Evans was diagnosed with choroidal melanoma in May of 2013. Andrew brings a decade of Agile experience from consulting- as both a hands-on project lead and as a trainer in Agile processes for large corporates as well as highly-regarded digital business programs through Hyper Island and The Talent Institute. He has also served as a mentor and organizer for Lean Startup Machine - a global 3-day bootcamp program that takes startups from ideas to customers. Since his own diagnosis, Andrew has striven to help other patients make sense of the complexities of their diagnoses, through active participation on social media and by writing a blog that attempts to explain cancer concepts in accessible terms. He moved to The Netherlands in 2014, and subsequently became actively involved with the Melanoma Patients Network Europe. As both a scientist and a patient, Mr. Evans holds a unique perspective on the disease experience.

Bettina Ryll holds a medical degree from the Free University of Berlin, Germany and a PhD in Biomedical Sciences from University College London, UK. After losing her husband to Melanoma, she founded the Melanoma Patient Network Europe and developed a special interest in patient-centric clinical research, innovative trial designs and novel drug development concepts, such as MAPPS (medicines' adaptive pathways to patients). Lately, she focuses on patient-relevant outcomes and sustainable healthcare models ensuring access to innovation for patients. Bettina is involved in numerous initiatives promoting evidence-based advocacy. She is fascinated by the enormous potential and capacity of patient networks to both educate and support patients as well as to capture data at the primary data source, the patients themselves, to generate evidence at a granularity level nonaccessible to outsiders. Since 2015, she also chairs the ESMO-PAWG, the first time this position is held by a non-oncologist.

Otto Freijser loves to challenge people to think differently, to solve problems creatively and to help others succeed. As a self-proclaimed Lean Innovation Evangelist, he is the co-founder of Perpetulon, a management consultancy for business innovation. Otto also directly coaches young start-ups and is member of the Dutch Lean Startup Circle, a platform initially created for like minded individuals to get together and talk about the Lean Startup philosophy and today, to explore and test both old and new startup principles.

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Good to know The Swedish currency is SEK 1 Euro = about 10 SEK You will be able to pay by card in most places, including taxis. Cash machines are also located in the arrival terminals of Stockholm Arlanda airport.

Weather Please prepare for the Swedish weather and check the weather report before travelling- we already had the first snow, so please bring hats, gloves and appropriate shoes.

Closest Airport Stockholm ARLANDA is Sweden’s main airport and ca 30 min drive away from Krusenberg Herrgürd.

Transfers Arlanda Airport to Krusenberg The best way to reach Krusenberg is by Taxi. We will arrange transfers for those of you who have submitted their flight details on the logistics sheet on slack. Should you travel independently, make sure you take an Uppsala (not Stockholm) taxi and have the hotel details including GPS coordinates and a phone number at hand- Krusenberg is not far but remote.

Krusenberg to Arlanda airport We will arrange transfers from the hotel back to Arlanda at the hotel. Should you travel independently, the hotel will be able to help you.

IncidentalsThe workshop budget covers workshop participation, accommodation and meals; please note that you will be responsible for all other incidentals like extra drinks and additional nights.

We thank for their support

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