Global MPN Patient Survey

Description

A mindmap to describe MPNAN's Patient Survey Project
Jonathan Mathias
Mind Map by Jonathan Mathias, updated more than 1 year ago
Jonathan Mathias
Created by Jonathan Mathias over 7 years ago
39
1

Resource summary

Global MPN Patient Survey
  1. Aims
    1. Primary
      1. Document the needs of the global MPN patient comminity
        1. Understand differentces between different groups
          1. Regions
            1. Countries
              1. Genders
                1. Age Groups
              2. Secondary
                1. Engage patient community
                  1. Promote MPNAN
                    1. Demonstate Access Inequality
                  2. Deliverables
                    1. Resources
                      1. SC
                        1. Dr Community
                          1. Will we need outside professional Input ?
                            1. Not immediately
                            2. MPNAN members
                            3. Costs
                              1. Methodology
                                1. Validate Aims
                                  1. Who should validate our aims?
                                    1. SC?
                                      1. Doctors?
                                        1. Euro, UK, US, Canada, Asia-Pacific
                                        2. Members?
                                          1. Leukaemia Care
                                            1. Pharma
                                              1. Researchers
                                                1. must minimise overlap with previous studies
                                                2. Are there Precedents for this type of project ?
                                                  1. Within LePAF?
                                                    1. Ask Jan Geissler
                                                    2. Other patient groups ?
                                                  2. Write Questions

                                                    Attachments:

                                                    1. Validate
                                                      1. Translate
                                                        1. Validate in each language
                                                        2. Sections
                                                          1. Demographic Info
                                                            1. Location
                                                              1. Gender
                                                                1. Age
                                                                  1. Condition
                                                                    1. Date of Dx
                                                                    2. Needs
                                                                      1. ...
                                                                      2. Think of the answer you want
                                                                        1. 100 max
                                                                          1. 20-30 min completion time
                                                                        2. Rollout
                                                                          1. Receive Data
                                                                            1. Store Data
                                                                              1. How?
                                                                                1. Where?
                                                                                2. Pilot
                                                                                  1. Aim for presentation of pilot results in MPNHZ 2017
                                                                                3. Analysis
                                                                                  1. Write Report
                                                                                  2. Publish
                                                                                    1. Plan / Manage
                                                                                      1. Create project plan
                                                                                        1. Validate
                                                                                        2. Manage
                                                                                          1. Track progress
                                                                                            1. Risks
                                                                                              1. Issues
                                                                                            2. Write Aims
                                                                                              1. see Aims section in green
                                                                                              2. Regulation
                                                                                                1. any approvals required?
                                                                                              3. Timeframe
                                                                                                1. Challenges
                                                                                                  1. Languages
                                                                                                    1. What language(s) are the highest priority?
                                                                                                    2. Ensure Statistical Value
                                                                                                      1. Data Protection
                                                                                                        1. Should patient responses be anonymous?
                                                                                                          1. Yes - will avoid data protection issues
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