Motivation
Apply Design Thinking to help research better address patient need and to ensure that research findings translate into better patient outcomes.
It's not about engaging for the sake of engaging.
As per recent internal discussion, we as Melanoma patient advocates engage in initiatives and research for two main objectives
1. better, more meaningful outcomes for patients, be it increased survival or better quality of life.
2. fastest possible translation of research findings into solutions for patients with rapid, equitable access.
Engagement is therefore a means to an end and not the goal in itself- it should deliver against these two main objectives, as well as against a set of potential secondary objectives. Using a deliberate and consistent thought process- 'Designed Thinking'- that captures our community's priorities and preferences is thereby more likely to contribute to meaningful impact than ad-hoc, on-top-of-one's-mind reactions to often vague or inappropriate triggers.
Opportunities on the rise but patient impact uncertain.
Opportunities and requests for patient engagement are on the rise. More often than not, patient advocates take a passive or reactive role- 'waiting to be invited'- and frustrations are rising as demands and scale are becoming increasingly unsustainable while impact for patients remains uncertain. Patient participation, engagement and involvement are supposed to describe an increasingly active patient role but ultimately, still cast patients in a reactive role in a framework defined by others.
Polycrisis, complexity and resilience
External conditions like climate change, war and an increasingly volatile geopolitical climate further add to already complex healthcare systems and directly affect patients. Methods to make sense of complexity, to take decisions under conditions of uncertainty and how to make progress by deliberate exploration and testing will therefore become increasingly important for the resilience of systems, not only from a patient advocacy point of view.
This workshop
This MPNE workshop will now investigate how patient advocacy community like ours as the organised part of patients as independent stakeholder community take on an active and proactive role, from passive patient engagement to self-determined, proactive patients' engagement, in line with our objectives of meaningful outcomes and rapid, equitable access.
We will discuss questions like: Where do we engage in research and in decision-making processes and how? Whom do we engage and in which way? What do we need in terms of capacity to ensure meaningful engagement? What type of expertise do we contribute to a discussion? What type of unique value do we add and how does that link with impact for patients? How do we evaluate impact and how do we account for unexpected but valuable opportunities?
The workshop will introduce/ refresh concepts and tools and apply them to the concrete example of Melanoma. The weekend will provide an opportunity to
- evaluate the patient engagement process from a conceptual and strategic level: what do we exactly want to achieve by engaging? Which role do we need to play for that? What is required to fulfil that role? What are opportunities, what are traps? How does one recognise and mitigate attempts at cooption?
- building on our Melanoma patient pathway and focusing on paint points, use a 'the future, backwards' approach to articulate a desirable future of MELANOMA SOLVED, steps required to reach that future and most importantly, opportunities for us to take action. Which technologies, policies, regulations and legal frameworks as well as outside events will influence that future?
What type of expertise, skills and tools will that require?
- gain hands-on experience with different facilitation and Design Thinking techniques. Reflect on how aspects like power imbalances, lay audiences, non-native speakers can be addressed in the design of a facilitation process. Learn about self-ethnography, an approach we are currently developing for our community within the MELCAYA project, explore Cynefin (R) Hexis and revisit MPNE regulars like the research partnership canvas.
- reflect on the overall political context and how this affects cancer patients, exchange and learn with peers about recent experiences in patient engagement, notably the first JCA evaluation and ongoing challenges with medical devices. What were the issues? How can we most effectively prepare? And how do we hold a system accountable that claims to act in patients' best interest but de fact does everything to exclude and/ or minimise patient input? Which type of developments will shape the future of healthcare?
Looking forward to some great discussions and to seeing you in Krusenberg-
Bettina
navigation shorts
program
version 1.2
Friday, 28th November 2025
Arrival during the morning
13.00- 14.30 Welcome and MPNE models revisited
Welcome to the workshop and a revisit of MPNE models linked to patient engagement.
With manifold opportunities for engagement but limited resources, it becomes critical to identify the most promising, not just the most obvious opportunities:
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The difference between a patient, a patient advocate and an expert and when to engage whom
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Different types of patient engagement: outreach versus user testing versus citizen science versus research
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Optimising for impact: which types of engagement or opportunities are most likely to generate impact for patients?
14.30- 15.00 Coffee break
15.00- 16.00 Return on engagement
MPNE's experience has shown that while primary objectives- such as improved patient outcomes and more equitable access- are the dominant drivers for engagement, they are insufficient to sustain meaningful engagement as
- they often are long-term impacts rather than short-term project outputs or mid-term outcomes
- they pay little attention to individuals needs (particularly important when working with volunteers)
- they do not account for the reality of patient organisations
The MPNE/ PCM4EU collaboration showed that participants had clear preferences on what a meaningful interaction looked like for both sides:
In this session, we will systematically work through the different aspects of return on engagement- what is needed to make engagement meaningful?
See also the MPNE blog on the same topic
16.00- 17.30 Methods
Action research and Design Thinking in advocacy
What does action research have to do with patient advocacy? And how can we leverage Design Thinking- in the sense of putting thinking- e.g. how to account for power imbalances, lay audiences, non-native speakers, different stakeholders which conflicting interests- into our work to ensure more meaningful results?
An introduction to self-ethnography
Violeta Astratinei
As part of MELCAYA, we are currently preparing a research project on the Sensemaker (R) platform that uses crowd-based observations to generate insights from the patient-perspective.
Test it yourself
Research partnership canvas
Negotiate a research partnership with help of the research partnership canvas. Account for primary and secondary motivations for both researchers and patient advocates. What does fair look like? Reflections on the process.
Dinner
For reference
Horizon Europe Program Guide - section on citizen engagement p54
Saturday, 29th November
Building on our previous work (e.g. the Melanoma patient pathways, 'the person I worry about', consensus meetings, Gillyweed) we will be using the morning to develop a comprehensive systems map of MELANOMA SOLVED using a technique based on 'The future, backwards', e.g. as here explained by Cynefin (R).
Please bring your laptops or tablets, we will be working in groups, the task will require internet searches and we will transfer the end results to a miro board.
9.00- 10.30 Working session 1
10.30- 11.00 Coffee break
11.00- 12.30 Working session 2
12.30- 14.00 Lunch
14.00- 15.30 The ECHoS impact model: planning for and assessing impact
A light-weight, group-based method to jointly develop an impact model with an underlying Theory of Change and an intervention logic that can be used prospectively (e.g. to inform the impact section of grant applications), intermittently to monitor progress or retrospectively to reflect on lessons learned and unexpected findings.
ECHoS- Establishing of Cancer Mission Hubs: Networks and Synergies- is an EU-financed Coordination and Support Action (CSA) that helps member states to implement Europe's Beating Cancer Plan (often referred to as BECA) and the EU Cancer Mission.
Read more about the implementation of BECA and the Mission here.
ECHoS Impact Models
Methodology for download under Milestone 9 from the ECHoS library
15.30- 16.00 Coffee break
16.00- 17.30 Between a rock and a hard place
In the last decade, survival in Melanoma has dramatically improved. However, we still lose half of our patients with advanced cutaneous Melanoma and even more of those with advanced rare Melanomas. Better use of existing therapies, e.g. in combinations, but also novel diagnostics and therapies would therefore provide enormous value to patients- only to then promptly become inaccessible due to their high price.
Patients are thereby caught between a rock and a hard place: dying because there are no effective drugs. Or dying because of lack of access to effective drugs. The worst? By trying to solve one problem, the other gets worse. At least if we are doing it the current way.....
Building a systems map on access to therapies from the patient perspective
Using a methodology developed by the Systems Mapping Academy, we will construct an access systems map, looking at the different components, stakeholders, interests, relationships and dependencies that drive patient access to novel medicines.
Introduction to the technique of systems mapping
Bettina Ryll
1- Framing
Access to medicines initiatives
Sarah Garner tbc
2- Exploring
Develop the basis structure of the systems map together
3- Mapping
See how the parts form the whole and how feed-back loops drive the behaviour of the system
Conclusion of the day
19:00 Dinner
Sunday, 30th November
9.00- 9.45 Access to novel therapies: revisiting the experiences from the JCA
Hearing back from the colleagues who were involved in this year's JCA- what went well, what did not go well?
Discussion
How do we as community prepare for future initiatives? And how does this link with the systems map?
9.45- 10.30 Work Session Reflection
Reflect on the the access systems map and the previous session, synthesize learnings and agree on overall principles.
10.30- 11.00 Coffee break
11.00- 12.30 Work Session Leveraging
Identify leverage points that could drive positive system change for patients.
12.30- 13.00 Bringing it all together for better patient outcomes- from tools over future thinking to system change.
Light lunch and departure
Event made possible through the support of
Participation
WHO SHOULD APPLY?
This meeting is for experienced European Melanoma patient advocates who are already involved or plan to get involved in patient enagement activities in e.g. European projects or with decision-makers and who have a particular interest in collaborating Europe-wide. The level of the meeting will be high and a sufficient level of English is required to follow. By accepting their place, participants agree to participate in the preparation, coordinated via a dedicated Slack channel.
HOW DO WE SELECT?
As always, participation is upon application only. First and foremost, we select based on motivation and the potential impact for Melanoma patients.
WHAT DOES IT COST?
Accepted participants will receive free registration and full-board accommodation for the 2 nights (Fri, Sat) of the meeting. Extra nights are at participants' own expenses and need to be arranged by the participants themselves.
COVID PROVISIONS
Venues are expected to comply with local COVID measures and so will the event. Please be aware that these differ from country to country. We expect participants to comply by local rules and ensure they are sufficiently vaccinated. In line with general rules, there will be no mask mandate anymore. Participation in the event is at the participant's own risk.
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. We will arrange airport transfers in Sweden, logistic sheets will be found on Slack; we will not reimburse extras outside that.
No attendance, no receipt = no reimbursement.
Logistics
Accommodation and venue
Krusenberg Herrgård
Krusenberg 436, 741 76 Uppsala, Sweden
GPS koordinater
Latitud: N 59° 44′ 8″
Longitud: E 17° 38′ 58″
Latitud: 59.73558245943259
Longitud: 17.649586782639698
X: 6625424
Y: 1603732
Closest airport
Airport Stockholm Arlanda
As in previous years, we will organise group transfers as Krusenberg isn't far but remote and can be difficult to find, especially in the dark.
Bus
From Knivsta Station or Uppsala Centralstation, there is the bus No 101 that goes till Krusenberg Herrgård several times per day. It's a 10 min walk from the bus stop till the building (down a beautiul and historic alley no less). The buss stop is called KRUSENBERG.