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27/52 MPNE patient engagement 1-0-1

So, you are looking to engage with patients in 2023? The year has barely started but the first requests are coming in. Past experience has taught us that badly planned engagement is disrespectful of people's time and intellect- and leads to frustration all around.

Clearly not the way to start a new year, so here my personal 1-0-1 on how I evaluate requests for patient engagement.

Please consider this a first draft, I am sure there will be things I missed. So, 80/20 and to be reworked in time!

1. What are you looking for?

So, why do you want to engage with patients? We are fully aware that most patient engagement activities are driven by funders or institutions requiring it. While we appreciate the honesty of people admitting to that up-front and also know that everyone has to start somewhere- this isn't enough for us to engage with you.

There are many different reasons for wanting to engage with patients and some are of more interest to us than others. This overview that we in MPNE developed during the MPNE 2023 miniMeet might help you to get started.

Still at a loss? No problem- if you can convince us that you deserve our time we can happily look at your activities at which places what type of patient engagement would have the largest impact. And yes, we also know what good patient engagement in a grant application looks like- and how to write it.

So what are we looking for in detail?

2. How will this make a difference for Melanoma patients or others?

We are in Melanoma. The first working principle of our network is PATIENTS FIRST. We are very much aware that many of the issues we face are not specific to Melanoma- so we first and foremost look for: How will this make any positive difference to patients?

And some vague promise of 'Scientific Progress' won't cut it here- we know how this works, folks, many of us have a research background- so, as concrete as you can make it please. This is not to be mistaken for a plea 'translational research only' that patients are so often accused of. We are very much aware that in Melanoma, we need some fundamental research into topics like immune evasion or initiation of metastasis (and many more)- but we will challenge you on e.g. the clinical relevance of your model systems because that is one of the factors determining how fast a finding will make it into the clinic- if at all. And THAT is relevant to patients.

3. What's in it for me/ the person you concrete involve personally?

Most of us are driven by the desire to make a true difference and are willing to go to considerable length for that. Still, everyone of us also has personal needs and interests. Failing to recognise people's personal agendas most be the most frequent reason why patient engagement strategies fail. If you offer patients the proverbial tea & biscuits- what you will end up with are people who, well, think that tea & biscuits are an appropriate recognition for their work.

If you want someone who can give your research that edge, help you uncover blind spots, has the system perspective you lack or networks you want to tap into- you will first need to find a way to find out what skills are available where and then, come up with something more substantial to offer so these people actually want to work with you. Thankfully, it usually isn't rocket science- most people want to learn, grow and contribute. And be recognised for that- so don't forget that these people belong on the author list of your papers.

4. What about the money?

While many of us will work for free for the things we truly believe in, remuneration is a form of recognition. It should be obvious that travel and accommodation during meeting attendance are covered- and it is really bad style when everyone else attends meetings in person and the patients are just dialled in for that one slot as nothing spells 'you don't belong here' quite as clearly. For various reasons, not all patients or patient advocates will accept remuneration for their work but it should at least be offered and that, at an appropriate level of seniority. You pay for what you value, so our internal short-hand to evaluate proposals is

budget for patient engagement

total budget

If the value then is 0.00001 or downright 0, well, all the talk about patient centricity won't help, will it?

5. What about time?

There should be a clear indication of the time anyone is expected to invest and tasks and intervals need to be realistically budgeted and scheduled. We have started tracking the time certain tasks take- a post on a patient forum easily takes 45 min, 2h aren't much if it's a complex question and for a serious issue, you can easily spend days. One blog on a topic I'm familiar with takes me 4h- which is precisely the reason why I made it only half-way through my planned 52 blogs last year as I hadn't thought it would take me quite that much time. That means that we ourselves often don't know how long we need, so simply measuring and adjusting accordingly is the way to go. And if all you want me to spend on that 60 page grant application of yours is 30 min? Then I'm even not getting started because nothing spells 'tick box' quite as eloquently.

6. Realistic expectations

Patient advocacy is a bottom-up movement, initiated and driven by personal need, interests and capabilities. Initiatives have a history, a defined culture and usually, organic growth. Advocates are united by a shared experience and cause, not a shared professional background as in other professional settings and at least in Europe, a lot of patient advocacy is done by volunteers in their spare time. This means that not everything is possible everywhere at all times. Activities that one cancer community pull off rather easily might be impossible for a community that is organised differently. Scale among volunteers happens differently than scale in a commercial setting- while resource constraints are real, the really important ones are usually people and ideas, not just money.

So while one can wish for many things when it comes to patient engagement, it is critical to understand the relevant landscape and to have realistic expectations for any chance of success.

7. Fun

And last but not least, how much fun is your project going to be? Despite progress, our community still regularly loses people we care about. Melanoma and our setting are serious and painful enough, so at least the work we do should be ambitious, inspiring and fun!

An agreement for mutual benefit

The type of partnerships we are really looking for are the ones where you get to

work with people who can give you the solution to a problem you didn't know you had.

We've actually developed and tested a version of the partnership canvas (used in business) for the research setting in 2022- it helps to clarify expectations for both sides and to arrive at mutually beneficial agreements. You can read more about the research partnership canvas here.

How do we know it's working?

Obviously, we are continuously asking ourselves whether what we are doing actually makes the a difference. It's tricker than initially thought, so very much work in progress.

Was this worth our time?

This is a simple tool that helps us reflect on 'return on engagement' for ourselves.

Are we having any impact?

Within iToBoS, the Horizon2020 project in which MPNE is one of the project partners, we are further developing an impact assessment methodology for patient engagement in research projects. We have noted that patient engagement activities are- if at all- evaluated by the 'involvers' or someone commissioned by the involver, not by the 'involvee'- and evaluations therefore focus on benefit to the involver, so the researcher or the company (classic example: recruitment into clinical trials).

While mutual benefit it critical to sustain any long-term interaction, the reason why researchers and institutions demand and patients participate in patient engagement is the desire for system change leading to greater societal benefit- research tackling the relevant problems of our time, faster translation, application and more effective commercial exploitation of research findings, new approaches and novel forms of collaboration. So, what's in it for the involvee, not just the involver? More to come!

What else are we working on?

We have made two particularly perplexing observations that we are currently unpicking:

1. People have been telling us that our contributions have made a critical difference. When asked why and how- they cannot tell us.

2. In hindsight, we can see that we have had significant impact. It nearly invariably seems to be something that we did not plan for and it is somehow hazy- we know it's there but we cannot accurately describe it either.

So it's somehow working but now, we are trying to understand the why and how it works- for good old curiosity's sake but also for scale. Implicit culture only scales very slowly, it's by making principles explicit that knowledge becomes transferable. Right now and for failure to come up with any better idea, we are simply trying to retrace what happened: circumstances, what we did, how things unfolded. Any other suggestions on how to think through such a scenario - please get in touch and tell us, we would love to know!!

We will keep you updated!

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