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
                                                                                                      Show full summary Hide full summary

                                                                                                      Similar

                                                                                                      All the Countries of the World and their Capital Cities
                                                                                                      PatrickNoonan
                                                                                                      CHEMISTRY C1 5
                                                                                                      x_clairey_x
                                                                                                      Maths C4 Trig formulae (OCR MEI)
                                                                                                      Zacchaeus Snape
                                                                                                      STEM AND LEAF DIAGRAMS
                                                                                                      Elliot O'Leary
                                                                                                      An Inspector Calls: Sheila Birling
                                                                                                      Rattan Bhorjee
                                                                                                      Input, output and storage devices
                                                                                                      Mr A Esch
                                                                                                      Biology (B2)
                                                                                                      anjumn10
                                                                                                      GRE Verbal Reasoning Vocabulary Flashcards 3
                                                                                                      Sarah Egan
                                                                                                      4. The Skeletal System - bones of the skull
                                                                                                      t.whittingham
                                                                                                      Types of Learning Environment
                                                                                                      Brandon Tuyuc
                                                                                                      GENERAL PRACTICE-1
                                                                                                      Luis Felipe Chávez Choque