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{\info
{\title Original file was structure.tex}
{\doccomm Created using latex2rtf 2.3.8 r1240 (released June 16 2014) on Mon May 18 13:44:01 2015
}
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{\pard\plain\s20\qc\sb240\sa240\b\f0\fs36\sl240\slmult1 \fi0 Developing a Data Management System for Obstetric Research Into Long Term Effect of In Vitro Fertilisation Techniques\par
\pard\plain\s21\qc\sa120\f0\fs20\sl240\slmult1 \fi300  Allard J. van Altena\par
\pard\plain\s21\qc\sa120\f0\fs20\sl240\slmult1 \fi0 University of Amsterdam\par
\pard\plain\s21\qc\sa120\f0\fs20\sl240\slmult1 \fi0 Email: a.j.vanaltena@amc.uva.nl \par
\pard\plain\s21\qc\sa120\f0\fs20\sl240\slmult1 \fi300 \chdate \par
\pard\plain\s80\ql\sb240\sa120\keepn\f0\b\fs20\sl240\slmult1 \fi0  Contents\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi0 \par
{\field{\*\fldinst TOC \\o "1-3" }{\fldrslt }}
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb60 \fi0 Chapter {\*\bkmkstart BMintroduction}1{\*\bkmkend BMintroduction}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Introduction\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 2 pages\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The domain and background\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What is the clinical background of the problem. Outcome of fertility treatment is unknown. Solved by linking PRN to IVF (introduce IVF-PRN project{})? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 What is big data?\par
{\cf6 \pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 {\b *Allard: }{\i (Where do I include a small piece of base information about big data?)}} Why is big data of importance for this problem? Introduce that data is being collected and should be shared/used in research. Move towards the point that there is a problem with data processes. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The data problem\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Talk about the research type in which data is being used (registration), say how other types of research (trials, RCT) might also benefit in the end. So what is the actual (data) problem we have? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Using IT as leverage\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Propose that we use IT to overcome the problem. How should the system help with the problem (link back to big data problems)? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Research questions\par
{\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How do we implement a user-friendly system in a IVF medical domain which covers problems concerning: data security, data access, data browsing, and data querying? {\par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What are the legal and security aspects of this system? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What is the data model for this system? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What are the functions of this system and which parts of the research process should this system support? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
Who are the users and what are the use-cases for these users? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What functions were actually implemented in the prototype? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
To what extent does this system meet the expectations of users? \par
}\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What needs to be changed in the current attitude towards data usage to promote big data in a IVF medical domain? {\par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What are the blocking aspects of data usage? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What are the promoting aspects of data usage? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
What alignment needs to take place to promote data usage? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li1200\fi-300 \bullet\tab
How can IT be leveraged to achieve this goal? \par
}}\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb100 \fi0 Chapter {\*\bkmkstart BMrequirements}2{\*\bkmkend BMrequirements}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Requirement Analysis\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 3 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 2.1  Process Analysis\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Doing research and IVF-PRN project{} data\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 How is research currently performed? What is data management in the context of the IVF-PRN system{}? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The system functionality concept\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Initial idea (before brainstorm), where does the system fit into the research workflow.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 2.2  Brainstorm\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 The execution and results\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Idea after brainstorm, where does the system fit into the research workflow now? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The similarities and differences\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Differences between before and after brainstorm. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Analysis\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Functions transposed in research workflow, what points are supported/improved. \line \par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi300 8 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 2.3  Security\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb180 \fi0 2.3.1  Literature Review\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Why is security so important it has its own section. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Medical big data ethics and security\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Might move big data to another section (introduction?). \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The \lquote how?\rquote  and \lquote why?\rquote  of security\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Why is security needed, background information. Integrate literature on security and introduce some concepts of security that were described. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The legal side of security\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Integrate Dutch law into the security, there are some requirements that need to be met for a system to be legal.\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 2.3.2  Interview\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Set-up\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Description of the interviews taken and what information was gathered there.\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 2.3.3  Technical & Procedural Cornerstones of Security\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Table of items that were distilled from literature and interviews. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Analysis\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Analysis, how do the security items apply to the system. \line \par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi300 2 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 2.4  Data Provenance\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What is data provenance. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The \lquote why?\rquote  of provenance\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What is provenance good for? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 The \lquote how?\rquote  of provenance\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 How can provenance be applied? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Analysis\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What does provenance provide for the IVF-PRN system?\par
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \fi0 Chapter {\*\bkmkstart BMsystem_functionality}3{\*\bkmkend BMsystem_functionality}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 System Design & Implementation\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 1 - 2 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 3.1  Function Design\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Visualised\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Show figures created by applying the brainstorm functions to the research workflow and describe in text what they are saying. \line \par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi300 4 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 3.2  Re-use\par
{\cf6 \pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 {\b *Allard: }{\i Rosemary subsection first and start comparison against other systems from there, or order like it is now?}}\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 3.2.1  Review\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 In-house development\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What is it now = neuroscience data management and processing system. Describe what Rosemary is and use that as a starting point to compare the other systems to (home-brew is our starting point in this). \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 External system evaluations\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Describe what systems were encountered and why they do not meet our needs and/or why Rosemary/home-brew was a better choice.\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 3.2.2  Rosemary\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Goodness of fit\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Functions of Rosemary. Compare to brainstorm functions. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Why Rosemary is the better pick\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Arguments for use of this system: re-use, in-house project, expertise is here, data model fits with minimal change (next chapter). \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Data model\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Describe Rosemary data model (datums, tagging, messaging, etc.), mention flexibility of the model. \line \par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi300 3 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 3.3  Implementation\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb180 \fi0 3.3.1  Processes\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Division of management tasks\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Describe user, data, request, and publication-management, which were implemented and which were left out for now. What functions for each of the tasks was implemented. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 User roles\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What user roles were implemented and which (parts) of the management tasks are they allowed to perform.\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 3.3.2  Rosemary\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Testing the data model\rquote s flexibility\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 How was the Rosemary data model changed to fit to our functional needs. Show figure with differences. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Back-end and front-end\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Explain how the front and back-end were changed to meet each of the functions.\par
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \fi0 Chapter {\*\bkmkstart BMevaluation}4{\*\bkmkend BMevaluation}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 System Evaluation\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 5 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 4.1  Case Evaluation\par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb180 \fi0 4.1.1  Set-up\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Describe set-up of case evaluation. \par
\pard\plain\s4\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb120 \fi0 4.1.2  Cases\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Researcher\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Evaluation with researcher user. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Committee\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Evaluation with committee user. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Administrator\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Evaluation with administrator user.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 4.2  Analysis\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Summary, positives and negatives. Where does the system fully support the users? What are the hard parts for the users? \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 System hits\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Positive points, successes, opportunities. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 System misses\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Missed opportunities, missing functions.\par
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \fi0 Chapter {\*\bkmkstart BMdiscussion}5{\*\bkmkend BMdiscussion}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Discussion & Conclusion\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 4 pages\par
{\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What are the biggest blocking factors in doing research with sensitive data and how can these be overcome? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What is the importance of supporting administrative tasks (provides security, better understanding, etc.)? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How can this specific system be used in other settings/knowledge domains? \par
}\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb300 \fi0 5.1  Overview and Implications\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Give short overview of all the chapters (outcomes/results). What are the outcome of the requirement analysis, design, software implementation, cases, and evaluation steps?\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 5.2  Appraisal\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Strengths and limitations\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 One registry as example (no branching to other domains). Limited time to program, thus less implemented functionality. However, this example provides many different angles to approach the problem. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Comparison with existing systems\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Comparison with other existing software (OpenClinica, etc) \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Future research and development considerations\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 What functions need to be implemented to give the system an extra \lquote boost\rquote . How can the system manage the expectations of users better. How can the system better support users in their data management tasks.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 5.3  Conclusion\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Answer the questions stated in the introduction.\par
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \fi0 Chapter {\*\bkmkstart BMposition}6{\*\bkmkend BMposition}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Data Management Position\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb240 \fi0 10 pages\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 6.1  Introduction\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Problem\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Describe data \lquote usage\rquote  phases and what the problems are now: {\par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Study preparation, data usage approval \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Data retrieval \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Data massaging/preparation \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Data analysis \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Data reuse \par
}\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Position\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 There should be more data re-use and cooperation between data producers/consumers. IT can help with the alignment of these two factions.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 6.2  Background and Evidence\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 How is research performed now? Describe Dutch law on privacy and data usage. Explain how METC and commissions influence data usage. Talk about clinicians. Patient willingness to share their data for research. Big data and its general stance on data usage.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 6.3  Discussion\par
(\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Limitations): {\par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How does Dutch law prescribe security and ethics to be taken into consideration and why does this matter, what is the fear? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Is law taken into account in the right manner every time? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How do METC, commissions, and other influential bodies limit the use of data? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What are the clinician\rquote s opinion, thoughts, and \lquote holding back\rquote  in fear of rebuttal \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What are expected hold-ups for research now (data gathering can take extremely long)? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
Will patients withhold their data for use in research and why? \par
}(\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Chances): {\par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What does existing big data research describe is necessary in order to conduct successful and meaningful studies? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What are some necessities for a certain fluidity in using sensitive data for research? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How to can limitations be aligned with the big data opportunities \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
What needs to be changed in attitude in order to open up data reuse and sharing (introduce Scandinavian ideas)? \par
\pard\plain\s46\ql\fi-283\li283\lin283\sb0\sa120\widctlpar\tql\tx283\f0\fs20\sl240\slmult1 \sb50 \li600\fi-300 \bullet\tab
How can online and offline (IT) be leveraged to bring convincing and easy-to-grasp ideas to inspire people to change their way of working? \par
}\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Give both sides of the issue and discuss how these two can be aligned with each other to meet at a sweet spot for both factions.\par
\pard\plain\s3\ql\sb240\sa120\keepn\f0\b\fs32\sl240\slmult1 \sb240 \fi0 6.4  Conclusion\par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb180 \fi0 Further steps\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 Figure out if IT can be leveraged to align medical and technical personnel. \par
\pard\plain\s6\ql\sb240\sa120\keepn\f0\b\fs24\sl240\slmult1 \sb120 \fi0 Proposing solutions\par
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \sb60 \fi0 IT leverage in the form of a system (like the one in this thesis).\par
\page
\pard\plain\s0\qj\widctlpar\f0\fs20\sl240\slmult1 \fi300 References go here\par
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \fi0 Appendix {\*\bkmkstart BMabbreviations}A{\*\bkmkend BMabbreviations}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Abbreviations\par
\page
\pard\plain\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Appendix {\*\bkmkstart BMsecurity_appendix}B{\*\bkmkend BMsecurity_appendix}\par
\pard\plain\s2\ql\sb240\sa120\keepn\f0\b\fs40\sl240\slmult1 \sb240 \fi0 Security Checklists\par
}}