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bettina
- Mar 31
- 3 min
28/52 WHY before HOW- patient involvement in research
At the moment, patient engagement/ involvement/ participation frameworks are multiplying. While certainly well-intended and at times...
12 views0 comments
bettina
- Jan 7
- 6 min
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...
307 views0 comments
bettina
- Nov 21, 2022
- 1 min
26/52 A systematic take on Patient Engagement
Outcome of MPNEminiMEET2022, Brussels The opportunities for patient engagement currently multiply. While in general a desirable...
113 views0 comments
gilliosaspurrier-b
- Oct 9, 2022
- 8 min
Sync not Sink our data – we need more cancer patient agency in health data use.
Gilly Spurrier, MPNE and Melanome France When my husband was diagnosed with Melanoma in 2008, I had a shocking warning from the local...
239 views0 comments
bettina
- Aug 24, 2022
- 2 min
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...
235 views0 comments
bettina
- Aug 16, 2022
- 2 min
24/52 Return on Engagement
The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore...
71 views0 comments
bettina
- Aug 14, 2022
- 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...
17 views0 comments
bettina
- Aug 14, 2022
- 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, 2022
- 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, 2022
- 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, 2022
- 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...
20 views0 comments
bettina
- Aug 12, 2022
- 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, 2022
- 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, 2022
- 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, 2022
- 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, 2022
- 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...
4 views0 comments
bettina
- Jul 31, 2022
- 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...
25 views0 comments
bettina
- Jul 30, 2022
- 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-...
50 views0 comments
bettina
- Jul 26, 2022
- 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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