25/52 The 5 reasons to take patients in cancer research seriously
There is an ongoing discussion on whether patients were to be engaged or involved in research- or even participate in it. At which stage...
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bettina
- Aug 16
- 2 min
24/52 Return on Engagement
The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore...
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bettina
- Aug 14
- 1 min
23/52 MPNE principles, a decision-aide
MPNE, the Melanoma Patient Network Europe, is a group of volunteers united by the desire to make a difference in Melanoma, rather than by...
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bettina
- Aug 14
- 1 min
22/52 MPNE is about making a difference in Melanoma, not about being a patient organisation
MPNE, the Melanoma Patient Network Europe, is a community of volunteers that is united in its determination to make a difference in...
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bettina
- Aug 14
- 3 min
21/52 Why the x/52 blog series: the post that should have come first
After just posting on the MPNE forum, I realised that I actually never wrote a proper introduction to this blog series of x/52 on how...
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bettina
- Aug 13
- 3 min
20/52 Directness and scale of impact
It started with a comment by Jean Mossman who was reflecting on her own advocacy experience. That was in 2012, so I do not recall the...
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bettina
- Aug 12
- 3 min
19/52 patient involvement: passive, active or consequential?
Sometimes one reads what someone else has written and thinks that is *precisely* putting into words what has bugged me for a while and...
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bettina
- Aug 12
- 6 min
18/52 How to plan a great conference session
Conferences are about connecting and learning, about inspiration and new ideas. Conference sessions obviously play an important part in...
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bettina
- Aug 12
- 4 min
17/52 Knowledge is protection- part 2: keeping patient communities safe from fake news
If information is distributed, both information gathering and quality control should equally be distributed. So how does one truthfully...
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bettina
- Aug 10
- 3 min
16/52 Knowledge is protection - part 1
Work in progress, version 1.0 One of the main reason patients join patient communities is to find trustworthy information on their...
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bettina
- Aug 5
- 4 min
15/52 Of nodes, hubs and cores- the MPNE network explained
It all started with the observation that the latest medical information on Melanoma was only available in English and was only accessible...
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bettina
- Jul 31
- 3 min
14/52 Patients need the best possible research
A common patient advocacy ask is: more research into our condition. While there is an obvious logic to it- we will not progress in areas...
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bettina
- Jul 31
- 2 min
13/52 The three pillars of effective patient advocacy
When observing what type of expertise and capabilities made patient advocates particularly effective in their work, I found that these...
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bettina
- Jul 30
- 4 min
12/52 The difference between patients and patient advocates
There is no universally agreed definition on what a patient advocate is. As the term is not protected- unlike most professional titles-...
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bettina
- Jul 26
- 2 min
11/52 Form follows function. And it always starts with observation....
Work in progress- some recent thinking. 'Arguing things through' is one of the most helpful activities any community can do. And as...
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bettina
- Jul 23
- 6 min
10/52 How to find the resources you need. And why you already have the tool. And it's not a list.
As a community on a mission to improve the chances to survive Melanoma and to minimise the impact of the disease on people and their...
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bettina
- Jul 16
- 5 min
9/52 Zero Melanoma: mission-driven advocacy- the MPNE framework in a nutshell
MPNE, the Melanoma Patient Network Europe, works according to an approach that is similar to the one in mission-driven innovation as...
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bettina
- Jun 3
- 4 min
8/52 Impact over control, better have skin in the game and as long as it works, we take it
Part of the series 'How MPNE works' We have noted that even networks members who have been with us for a long time do not fully...
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bettina
- Apr 19
- 3 min
Design Thinking for patient partnerships in research
On Monday, 21st March 2022, Gilly and Bettina from MPNE attended the Conference on Civic Engagement in EU Missions. This was a high level...
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bettina
- Apr 16
- 5 min
PRESS RELEASE
iToBoS 1st anniversary EU-funded project aims to create a holistic diagnostic and assessment tool for early detection of melanoma iToBoS...
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