Krusenberg 2018 Program

Melanoma Patient Network Europe Krusenberg 2018 The price for a life - 25

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November 2018, Uppsala

MPNE Krusenberg2018 annual workshop for MPNEhubs

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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″ 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 5th edition of our annual workshop for MPNEhubs in Krusenberg- A price for a Life.

Why this workshop?

Adding a price tag to a life seems unethical. At the same time, limited healthcare budgets and delays in access to potentially lifesaving therapies are a dire part of Melanoma reality and directly decide who gets a least a chance to survive. And who doesn't.

We as Melanoma patient advocates need to be actively involved in finding solutions that save the lives of Melanoma patients AND that respect the needs of our societies.

This workshop attempts to shine light on a few different perspectives around healthcare economics, resource allocation and attempts at cost control and gives you plenty of opportunity for discussion to understand every party's constraints and reasoning.

In addition, plenty of time to discuss advocacy issues with your colleagues!

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

Bettina, Gilly, Fredrik and Violeta MPNE

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program version 20th November

Thursday, 22nd November 2018 Day 1- workshop and welcome Arrival and registration 12.30- 13.30 lunch 13.30- 15.00 Workshop- Patient involvement in HTA MPNE We will be looking where in our network there is already effective patient involvement in HTA, how we can help each other and how national EUPATI platforms could help train patient advocates.

In the case study part, we will discuss ongoing patient submissions to HTA bodies, so bring your material if you want input from your colleagues!

Introduction- why patient input into HTA processes?

10' The patient perspective Bettina Ryll, MPNE 10' The HTA perspective Chris McCabe, IHE Case study Please answer the following questions - is there a defined process for patient submissions in your country?

- has there been clear communication what type of information and perspective the assessors consider particularly helpful?

- is there a template for the submission?

- is the template a suggestion or compulsory?

- how much freedom do you have to submit what you consider relevant?

- any inexplicable restrictions- e.g. 'patients cannot comment on clinical data'?

- any type of bias you perceive- in terms of who can submit or the format of the submission?

- is there a feed-back mechanism in place, so if you have submitted in the past, were you able to get constructive feed-back on your submission?

France

Gilly Spurrier

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Input = Output. How to ensure our submissions are of highquality, relevant and to the point.

10' Educational opportunity: Overview over national EUPATI platforms Roald Nystad, MPNE 15' Discussion- MPNE members' involvement in national EUPATI platforms 10' Discussion: Problems with patient submission all 15.00- 15.30 Coffee 15.30- 16.30 Creating a resource for MPNE Melanoma advocates to support HTA submissions Further reading EUPATI guidance on patient involvement in HTA EPF survey on patient involvement in HTA in Europe 16.30- 18.00 Lean Advocacy- one year on Re-visit the tools and formulate an MPNE Lean Advocacy Tool Kit 'Best of' from last year's Krusenberg workshop and the tools to take forward for your advocacy work.

Andrew Evans, Bettina Ryll 18.00- 19.15 Welcome and elevator pitch introductions Your 2 min of fame- train to introduce yourself effectively! all 20.00 Dinner

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Friday, 23rd November 2018 Day 2- Introduction to HTA from 7am Breakfast 8.30- 10.00 Session: Introduction to HTA Chris McCabe, IHE 10' Welcome to the workshop and this session Bettina Ryll, MPNE 10' HTA and Universal Healthcare Vlad Dutescu, MPNE and Melanom Romania Introduction to HTA Chris McCabe Understand the motivation and principles behind Health Technology Assessment Main concepts of HTA 10.00- 10.30 Coffee 10.30- 11.45 Session: HTA in Europe- EUnetHTA and the Nordic Collaboration Niklas Hedberg, TLV and EUnetHTA • • • •

EUnetHTA EUnetHTA core model current EU proposition for joint clinical assessment FINOSE Discussion Further reading Overview and comparison of HTAs in Europe from the European Commission HTA in the Nordic Countries 12.00- 13.00 Lunch 13.30- 15.00 Session: Uncertainty in decision-making Johan Hansson, KI, Sweden Niklas Hedberg, TLV and EUnetHTA

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Chris McCabe, IHE, Canada Understand why uncertainty is problematic and discuss strategies to effectively reduce it for the benefit of all stakeholders involved Clinical perspective Johan Hansson, Karolinska Institutet, Stockholm, Sweden tbc HTA perspective Niklas Hedberg, TLV Payer Perspective Chris McCabe Patient perspective Group work and discussion 15.00- 15.30 Coffee 15.30- 17.00 Session: Real World Data in HTA assessment Chris McCabe, Niklas Hedberg Introduction to Real World Data Why is Real World Data important?

How to incorporate RWD into HTA decision-making further reading A good introduction- Real-world-evidence-for-health-technologyassessment-of-pharmaceuticals-opportunities-and-challenges - full text of A. Makady's PhD thesis available on slack GetReal - a project looking at the use of Real World Data in HTA

17.00- 18.30 Advocacy session: MPNE members only DATA Rob White and Fredrik Ă–stman Data is highly relevant for decisions in healthcare but as such, rather a vague concept. In this session, we will simply have the time to listen to two of us who spend most of their working time on data- so time to pick their brains about the challenges, concerns and potential of data!

19:30 Reception 20:00 Dinner

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Saturday, 24th November 2018 Day 3- thoughts on innovation from 8 Breakfast 8.30- 9.00 Session: recent findings in adjuvant Melanoma therapies A review of the latest adjuvant Melanoma studies Johan Hansson tbc 9.00- 10.00 Session: Bench to bedside: from scientific finding to clinical application We continuously read about 'highly promising' results in clinical journals but what does it REALLY take to turn a scientific finding into a clinical application? And what type of evidence does it take to prove that something is actually working?

Arjan van Manen and Jvalini Dwarkasing, SkylineDx 10.00- 10.30 Coffee 10.30- 11.45 Session: Electronic Health Records An introduction to Electronic Health Records- what they are, what is important to understand about them and how they help to improve care Maria Hägglund, Uppsala University and Karolinska Institutet, Stockholm further reading https://mariahagglund.wordpress.com 12.00- 13.00 Lunch 14.00- 15.00 Session: Evidence for access Evidence requirements for the submission of new medicines vary from country. Hear from an agency specialized in supporting market access for new products and get a better understanding of country-specificities.

Jeanni van Loon, PRMA consulting 15.00- 15.30 Coffee

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15.30- 16.30 Advocacy Session 1- MPNE members only Advocates driving research Koen van Elst, Violeta Astratinei 16.30- 18.00 Advocacy Session 2- MPNE members only Issues in advocacy Discuss with your colleagues the advocacy challenges you face! all

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

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Sunday, 25th November 2018 Day 4- Advocacy Day MPNE members only 8.00- 9.00 Breakfast please make sure you check out 9.00- 10.00 Principles in advocacy 30' MPNE our network How does a network work and what type of skills will we need in the future?

Group exercise 30' Learning from our colleagues in HIV and CML: ECABEuropean Community Advisory Boards Bettina Ryll, Gilly Spurrier and Violeta Astratinei 10.00- 10.30 Coffee 10.30- 12.30 MPNE in action •

Melanoma in CEE- the situation in Ukraine Violeta Astratinei and Valdimir Chekhmir

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Update about recent developments within MPNE- Horizon2020 projects in rare Melanomas, new meetings, growing network Annual session: unmet need in the network MPNE in 2019- annual conference, meetings, other opportunities Ask your colleagues: topics you want to discuss with other MPNEhubs

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12.30- 12.45 Workshop Summary and Closure Bettina Ryll, MPNE 13.00- 14.00 Lunch and Departure

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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 You will receive detailed instructions after the event.

Reimbursement up to the agreed limit and against complete receipts only. Please note that we now process everything electronically, so no more paper receipts to post!

external faculty Chris McCabe, IHE, Canada Niklas Hedberg, TLV and EUnetHTA, Sweden Johan Hansson, Karolinska Institute, Sweden Arjan van Manen, SkylineDx, Netherlands Jvalini Dwarkasing, SkylineDx, Netherlands Jeanni van Loon, PRMA consulting Maria Hägglund, Karolinska Institute, Sweden

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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.

Incidentals The 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.

Contact during the workshop best via our Slack platform, otherwise: Bettina Ryll +46-722297272 Gilliosa Spurrier +33-676318349 Violeta Astratinei +31-646699527

We thank for their support

MPNE Krusenberg 2018

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