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7/52 Patients' involvement in research- most value for your time, risks and sweet-spots

At last weekend's Bootcamp21 in Berlin, we made real progress on mapping a patient-centric research ecosystem, got started on using partnership canvasses to map the interaction between us as MPNE and researchers, research funders and commercial partners

and came up with a method how to practice negotiating your position in research partnerships which we will most definitely test in our next event (watch this space!!).

And then we realised....we had jumped over a step. So on Thursday's MPNE meet-up we ran the PREQUEL to the weekend. The work is in progress but this post covers the basics we started from: What are the ways for us to engage in research, how do we get most impact for the resources we invest- and where are the risks as well as the sweet-spots for us?

MPNE's first principle is: patients first. Which means that we don't engage in research in order to engage. We engage in research because we still lose half of our people with advanced disease, so we need solutions for those with advanced disease and smart ways to prevent the ones with early disease from getting to advanced disease in the first place.

We also have limited resources- the most important one being our time. We know that our ability to move anything depends on our level of knowledge, so there needs to be time for learning. We've worked very hard over the years to establish credibility and trust in our own community as well as with other stakeholders, so we will obviously not put that at risk. And then, we are looking for activities that are a stretch and allow us try new things and grow- things that are going to be fun. Melanoma is already bad enough, we are surrounded by suffering and death all the time. At any moment in time, there will be people in our group with progressing disease and we know that we will loose some of them, like so many before- we really don't need anything else adding to that.

In a nutshell: impact, learning opportunity and fun- and obviously, no reputational risk.

We mapped engagement from passive (on the left) to active (on the right) and added thoughts on our ability on to influence decisions, the time we would need to invest, the expertise required, how innovative solutions are likely going to be- and in how far we can scale this type of activities. To obviously conclude where we expect most impact and where we see risks.

Right now we are going through each of the steps in detail- what the benefits for us, what are the negatives, where are the risks- to in the end develop some guides to allow patient advocates to optimise their research engagement while minimising the associated risks.

For a high-level overview of the categories that we have come across in the last years, in increasing order of active participation from our side:

Communication material for patients

Very frequent, mostly requiring non-remunerated editorial work on pre-written content or mere dissemination. Issues are poor quality, both in terms of content and in particular, style, lack of understanding of the target population and our dissemination channels. Extremely time-consuming with no final editorial control. The reason we wrote V2A2.

Potentially interesting when going into a new field as educational resource. Educational opportunity to teach researchers to write better lay abstracts and writing in general- highly relevant for successful grant applications.

Reputational risk by endorsing poor content.


Most common, in particular for inexperienced grant writers. Consortia haven't considered the full call and only realise close to submission they are lacking a patient organisation to qualify for funding. At that point in time, there is usually no budget left for this: most consortia operate to a surprisingly ineffective way of allocating funding- every partner sends in an attempt to secure an over-proportional part of the funding, resulting in a budget larger than the available sum, followed by cuts in the form rounds of negotiations by relevance to the project (if time), but usually, a fixed % cut per partner, usually in the order of 10- 20%.

The most likely outcome is an addition to the work package for communication and dissemination with no allocated funding and poorly specified or unrealistic deliverables.

This differs for projects that rely on patients critically contributing to the project- like clinical trials, bio-banking or projects relying on surveying patient communities.

Risk for patient advocates if the consortium tries to use project participation to force patient advocacy groups to actions that go against the interests of the patient community. E.g. help recruit for clinical trials (patients need good trials, not just a trial), use patient communities as easy resource surveys or dissemination (survey fatigue in our communities is real, disrespectful or poorly designed surveys cause upset and extra work, patient community doesn't benefit from outcomes if that's just a publication and people are rightfully annoyed of being taken advantage of).

In change management, co-optation is a deliberate tool to make potentially difficult stakeholders part of the team. Co-opted partners will only be given activities with no real impact on the overall project and they hold no decision power. At the same time, they will be held morally accountable for the success of the overall project.

A classic example of co-optation in our field would be calling the review of informed consent forms 'patient participation in clinical trial design'.


As opposed to co-optation, a research partnership means real influence on the fundamental aspects of a research project like the research area, grant evaluation and selection (only if full voting rights, also this a space for co-optation), formulation of the research hypothesis, choice of methods. The type of partnership obviously depends on the available expertise and can differ from project to project- it could e.g. be scientific in one and facilitation in another. We are currently working on methodologies for research partnerships, so more to follow in next blogs!

A risk is that partnerships rapidly become very time-consuming and resource-intensive which can become problematic, in particular if not appropriately budgeted.

Research initiators

And obviously, a patient group can also run its own research. At which point- you have become a researcher playing by the same rules as anyone else.

A risk is that conducting research is extremely time and resource-intensive. It is also easy to fall for the temptation to finally want to control the entire process, often after years of frustration of being manipulated. However, a good idea is to always start with evaluating whether one is the best party to answer a given question in terms of expertise and capacity, not just in terms of motivation. Because if someone else is better at it...better use one's motivation to convince them to do it. And one's own resources to address the next research problem.

We will continue working on concepts and tools around research, so watch this space!

Bettina Ryll

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