​MPNE strategy for engagement in research: it's about outcomes that matter to patients, not about engaging for the sake of engaging.​​

Opportunities for the engagement in research multiply, but often feel unsatisfactory. What can we do differently to achieve different results? 

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As per recent internal discussion, we as MPNE Melanoma patient advocates engage in initiatives and research for two main objectives

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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 and we will work on an MPNE strategy for engagement in research. 

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. 

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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. We will see how we can take a more anticipatory and proactive stance: how do we identify and articulate unmet patient need? Identify and effectively address policy gaps? Contribute to research that no other stakeholder can provide? Time for a new angle!

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Polycrisis, complexity and resilience- why missions?

External conditions like climate change, war and an increasingly volatile geopolitical climate 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.

Missions- such as the EU Cancer Mission- aim to tackle society's complex 'wicked' problems by mobilising broadly around a shared aim. Alignment in a situation without a single problem-owner is far from trivial, so get an update from the ECHoS project about the implementation of National Cancer Mission Hubs and test Impact Models as a sense-making, planning and self-alignment tool for communities.  

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Between a rock and a hard place- the innovation versus access dilemma

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..... Using a systems mapping approach, we will try to untangle the different parts of this complex ecosystem, ilooking at dependencies, self-reinforcing loops and opportunities for change.

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Apply Design Thinking* to help research better address patient need and to ensure that research findings translate into better patient outcomes and to deal with complex 'wicked' problems affecting patient communities and society at large. 

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This workshop

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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?

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The workshop will introduce/ refresh concepts and tools and apply them to the concrete example of Melanoma.​​ The weekend will provide an opportunity to

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- 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? Reflect on the unique contributions that patient communities can make and explore the concept of playfulness (not gamification!) in problem-solving. 

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- 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?

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- 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. And sharpen your systems mapping skills on the topic of innovation versus access with the toolkit from the Systems Mapping Academy!

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- 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? 

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*'Designed Thinking' 

We apply the term Design Thinking rather loosely, not following any prescribed method and obviously rather not for product development- but rather as 'Designed Thinking', as a deliberate, structured and replicable thought process for which we often haven simple 'thinking aids' in the form of figures or methods. More to read on Design Thinking e.g. here

Looking forward to some great discussions and to seeing you all in Krusenberg!

Bettina 

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