22nd November- 25th November 2018
please note that this workshop already starts on THURSDAY
Krusenberg Herrgård, Uppsala, Sweden
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 life-saving 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. Understanding every party's constraints and reasoning is the start!
Join us to tackle questions like these
What are the economic constraints a healthcare system is facing? What is 'value' for a healthcare system? What is 'value' for a Melanoma patient? How do we measure that? And what happens when it takes too long to measure? And how can we be fair across our entire societies and not only for small groups of people? What is a 'fair' price? And what are the intended- and unintended- consequences of certain economically motivated decisions?
Christopher McCabe is the Executive Director and CEO of the Canadian Institute of Health Economics (IHE).
A health economist by training, Chris has worked in the UK with local commissioners in the NHS evaluating new technologies to inform funding decisions, the English HTA body NICE and held chair positions in health economics at the universities of Leeds, Warwick, Sheffield and most recently in Alberta, Canada, where he led two Genome Canada research groups focused on the evaluation, adoption and implementation of Precision Medicine technologies.
Chris is passionate about social justice, an avid tweeter and most recently, very interested in the use of real world evidence in HTA decision-making.
Niklas Hedberg is the Chief Pharmacist at the governmental authority, the Dental and Pharmaceuticals Benefits Agency (TLV), in Sweden. Since May 2018, Niklas is the Chair of the EUnetHTA Executive Board. He has been a member of the Executive Board and the TLV lead partner in EUnetHTA, leading WP 3 – Evaluation since June 2016.
The Dental and Pharmaceutical Benefits Agency, TLV, is a central government agency whose remit is to determine whether a pharmaceutical product, medical device or dental care procedure shall be subsidized by the state. We also determine retail margins for all pharmacies in Sweden, regulate the substitution of medicines at the pharmacies and supervise certain areas of the pharmaceutical market.
Karolinska Institutet, Stockholm
Arjan van Manen
Arjan van Manen is responsible for the commercial development of the diagnostics product portfolio at SkylineDx. This requires a close collaboration with the clinical and scientific development team from the beginning of the discovery. With a degree in International Business, Arjan has gained a diverse background in commercial international positions, clinical and scientific affairs and market access before joining the team at SkylineDx. In his previous position, at B-MS, he was responsible for the introduction of Immuno-Oncology treatments into the Netherlands and Belgium.
Jvalini Dwarkasing, PhD is a scientist at SkylineDx, and responsible for the clinical and scientific development of in-licensed technologies at SkylineDx. Jvalini manages a multi-disciplinary team of experts and collaborates with leading physicians and institutes to come from a discovery to a product that would bring value to the treatment pathway of patients diagnosed with melanoma and multiple myeloma. This includes performing due diligence on the scientific results underlying the licensed IP, and, after in-licensing, development and validation of new products. Prior to starting at SkylineDx, she was trained as a scientist during her PhD studies at Wageningen UR where she was dedicated to unravel pathological mechanisms involved in appetite and weight loss during cancer progression. Later on, she continued her work in oncology as postdoctoral researcher at Wageningen UR and Nutricia Advanced Medical Nutrition.
Maria Hägglund is an associate professor in health informatics and a senior lecturer in implementation science at Uppsala university. She defended her PhD thesis in medical informatics at Uppsala university 2009. The thesis focused on mobile IT in homecare. As a researcher at Karolinska Institutet (2009–2018) her interest in usability and eHealth continued, but her focus shifted towards co-design, patient-driven innovation and eHealth empowering patients and family caregivers. http://katalog.uu.se/profile/?id=N99-687
Who should apply?
This workshop is directed at MPNEhubs, European Melanoma advocates who want to connect between their own country and the European Melanoma community- we are looking for advocates with a keen interest to share, work together and put in the effort before, during and after the workshop to produce concrete results for our network!
The number of participants is limited to 30 advocates to ensure effective exchange. A good enough working knowledge of English is essential to participate in the discussions!
How does it work?
1. Application: Attendance of this workshop is upon application only.
2. Selection: The organising committee will select participants based on their motivation with regards to access to innovative therapies in Melanoma, experience in collaboration and exchange and their level of English. As always, we are aiming for a balanced European mix!
3. Acceptance: Selected applicants will need to accept their place at the workshop and agree to
4. Accommodation: registration, accommodation and workshop meals will be arranged by MPNE and are free for selected advocates during the workshop (Friday and Saturday night).
5. Travel: Advocates however need to arrange their own travel- please wait until you have heard from us before booking. We are able to provide a travel allowance up to 400 Euro for economy/ 2nd class travel after the event and against original receipts only.
6. Extras: Please note that extras at the hotel, additional nights as well bank fees are at your own expenses and will not be covered by MPNE.
Gilliosa Spurrier, MPNE
Violeta Astratinei, MPNE
Bettina Ryll, MPNE
Fredrik Östman, MPNE
Last update 17th November 2018 BR
Workshop participation, travel
and full-board accommodation
will be free for participants.
Participation is upon application only.
MPNE WORKSHOP 22nd- 25th November 2018
Krusenberg Herrgård is a friendly conference center
and hotel at the lake Mälaren, a 25 min drive away from Stockholm Arlanda, Sweden's main airport.
We thank for their support
The small print
Decisions about workshop participation will be based on suitability for the workshop as well as scope of the Melanoma patient network Europe and are final.
MPNEsupport Org 802492-1069, Sweden
Melanoma Patient Network Europe