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8482911
Global MPN Patient Survey
Description
A mindmap to describe MPNAN's Patient Survey Project
No tags specified
mpn advocates network survey project mindmap
healthcare / medical
Mind Map by
Jonathan Mathias
, updated more than 1 year ago
More
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Created by
Jonathan Mathias
over 7 years ago
39
1
0
Resource summary
Global MPN Patient Survey
Aims
Primary
Document the needs of the global MPN patient comminity
Understand differentces between different groups
Regions
Countries
Genders
Age Groups
Secondary
Engage patient community
Promote MPNAN
Demonstate Access Inequality
Deliverables
Resources
SC
Dr Community
Will we need outside professional Input ?
Not immediately
MPNAN members
Costs
Methodology
Validate Aims
Who should validate our aims?
SC?
Doctors?
Euro, UK, US, Canada, Asia-Pacific
Members?
Leukaemia Care
Pharma
Researchers
must minimise overlap with previous studies
Are there Precedents for this type of project ?
Within LePAF?
Ask Jan Geissler
Other patient groups ?
Write Questions
Attachments:
MPN Global Patient Needs Survey
Validate
Translate
Validate in each language
Sections
Demographic Info
Location
Gender
Age
Condition
Date of Dx
Needs
...
Think of the answer you want
100 max
20-30 min completion time
Rollout
Receive Data
Store Data
How?
Where?
Pilot
Aim for presentation of pilot results in MPNHZ 2017
Analysis
Write Report
Publish
Plan / Manage
Create project plan
Validate
Manage
Track progress
Risks
Issues
Write Aims
see Aims section in green
Regulation
any approvals required?
Timeframe
Challenges
Languages
What language(s) are the highest priority?
Ensure Statistical Value
Data Protection
Should patient responses be anonymous?
Yes - will avoid data protection issues
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