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31/52 A patient consensus process to develop a substantiated position to inform decision-making and policies
Bettina Ryll Requests for feed-back on anything from information material over surveys to policies and for participation in stakeholder...

Bettina Ryll
Sep 21, 20242 min read
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Rob @DIA Europe 2024
'I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug...

Bettina Ryll
Apr 10, 20245 min read
34 views
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MPNEconsensus 2024: a patient consensus on data, AI and data-dependent business models.
On 31st January- 2nd February 2024, MPNE organised the MPNEconsensus2024 meeting on data, AI and data-dependent business models with the...

Bettina Ryll
Mar 28, 20242 min read
69 views
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30/52 How to evaluate a translational research proposal
8 points to think about when evaluation a translational research proposal

Bettina Ryll
Aug 30, 20234 min read
210 views
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29/52 How to evaluate patient involvement in a research grant application
Bettina Ryll Soon it will be autumn, the season of changing leaves- and of grant reviews! And with more and more research funders...

Bettina Ryll
Aug 12, 20233 min read
448 views
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MPNE 2023
On April 28th-30th 2023, 89 Melanoma patients, carers and patient advocates from 24 countries within and outside the European Union met...

Bettina Ryll
May 10, 20232 min read
132 views
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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...

Bettina Ryll
Mar 31, 20233 min read
57 views
0 comments
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...

Bettina Ryll
Jan 7, 20236 min read
352 views
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26/52 A systematic take on Patient Engagement
Outcome of MPNEminiMEET2022, Brussels The opportunities for patient engagement currently multiply. While in general a desirable...

Bettina Ryll
Nov 21, 20221 min read
181 views
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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...
gilliosaspurrier-b
Oct 9, 20228 min read
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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...

Bettina Ryll
Aug 24, 20222 min read
260 views
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24/52 Return on Engagement
The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore...

Bettina Ryll
Aug 16, 20222 min read
159 views
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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...

Bettina Ryll
Aug 14, 20221 min read
28 views
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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...

Bettina Ryll
Aug 14, 20221 min read
23 views
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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...

Bettina Ryll
Aug 14, 20223 min read
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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...

Bettina Ryll
Aug 13, 20223 min read
28 views
0 comments


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...

Bettina Ryll
Aug 12, 20223 min read
44 views
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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...

Bettina Ryll
Aug 12, 20226 min read
26 views
0 comments


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...

Bettina Ryll
Aug 12, 20224 min read
23 views
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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...

Bettina Ryll
Aug 10, 20223 min read
40 views
1 comment
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