DMP health sciences


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Presentation given by Sarah Jones at a seminar run by LSHTM on 6th November 2012.

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  • Some ask for a data sharingor data access plan instead of a DMP, or simply encourage you to describe plans for data cleaning, monitoring & verification. Gareth’s analysis of health-related funders highlighted those listed here as having some form of requirement.
  • There are various templates in DMP Online based on different funder requirements and institutional customisations
  • DMP health sciences

    1. 1. Data Management Planning for the health sciences Sarah Jones Digital Curation Centre
    2. 2. What is a Data Management Plan?A brief statement outlining how data will be created,managed, shared and preserved, explaining decisionsand justifying any restrictions that need to be applied.Often submitted as part of grant applications, butuseful whenever you’re creating data.
    3. 3. Why develop a DMP?• to help you manage your data• to provide guidelines for everyone to work to• to anticipate and avoid problems e.g. data loss• to make your life easier!• to comply with funders requirements...
    4. 4. Who requires a DMP or equivalent?
    5. 5. Cancer Research UKThe following should be considered when developing a data sharing plan:• The volume, type, content and format of the final dataset• The standards that will be utilised for data collection and management• The metadata, documentation or other supporting material that should accompany the data for it to be interpreted correctly• The method used to share data• The timescale for public release of data• The long-term preservation plan for the dataset• Whether a data sharing agreement will be required• Any reasons why there may be restrictions on data sharing
    6. 6. Medical Research CouncilThe MRC provides a template with the following sections:0. Proposal name1. Description of the data2. Data collection / generation3. Data management, documentation and curation4. Data security & confidentiality of potentially disclosive personal information5. Data sharing and access6. Responsibilities7. Relevant policies on data sharing and data security8. Author of this Data Management Plan (Name) and contact details
    7. 7. Wellcome TrustApplicants should consider the following seven questions:i. What data outputs will your research generate and what data will have value to other researchers?ii. When will you share the data?iii. Where will you make the data available?iv. How will other researchers be able to access the data?v. Are any limits to data sharing required – for example, to either safeguard research participants or to gain appropriate intellectual property protection?vi. How will you ensure that key datasets are preserved to ensure their long-term value?vii. What resources will you require to deliver your plan?
    8. 8. Five common themes in DMPs1. Provide a description of the data2. Explain how the data will be collected & documented3. Outline the plans for data sharing4. Justify any restrictions on sharing5. State the long-term preservation plan
    9. 9. Provide a description of the dataWhy is this important?A good description of the data to be collected will help reviewersunderstand the characteristics of the data, their relationship toexisting data, and any disclosure risks that may apply.e.g. The proposed research will include data from approximately500 subjects being screened for three bacterial sexuallytransmitted diseases (STDs) at an inner city STD clinic. The finaldataset will include self-reported demographic and behaviouraldata from interviews with the subjects and laboratory data fromurine specimens provided. n.b. EXPLANATIONS AND EXAMPLES COURTESY OF NIH AND ICPSR
    10. 10. Explain how the data will be collectedWhy is this important?Creating data in formats preferred for archiving helps to ensurethat they will be usable in the future. Good descriptive metadataare essential for effective data use.e.g. Quantitative survey data files generated will be processed asSPSS system files with DDI XML documentation. The codebookwill contain information on study design, sampling methodology,fieldwork, variable-level detail, and all information necessary fora secondary analyst to use the data accurately and effectively.
    11. 11. Outline the plans for data sharingWhy is this important?Sharing data helps to advance science and to maximize theresearch investment. Your funder probably expects you to sharedata wherever possible.e.g. We will make the data and associated documentationavailable to users under a data-sharing agreement that providesfor: (1) a commitment to using the data only for researchpurposes and not to identify any individual participant; (2) acommitment to securing the data using appropriate computertechnology; and (3) a commitment to destroying or returning thedata after analyses are completed.
    12. 12. Justify any restrictions on sharingWhy is this important?As funders expect data to be shared, any restrictions need to bevalid. Protection of human subjects is a fundamental tenet ofresearch and an important ethical obligation for everyone.e.g. Because the STDs being studied are reportable diseases, wewill be collecting identifying information. Even though the finaldataset will be stripped of identifiers prior to release for sharing,we believe that there remains the possibility of deductivedisclosure of subjects with unusual characteristics. Thus, we willmake the data and associated documentation available to usersonly under a data-sharing agreement.
    13. 13. State the long-term preservation planWhy is this important?Digital data need to be actively managed over time to ensure thatthey will always be available and usable. Depositing data resourceswith a trusted digital archive can ensure that they are curated andhandled according to good practices in digital preservation. e.g. The investigators will work with staff at the UKDA to determine what to archive and how long the deposited data should be retained. Future long-term use of the data will be ensured by placing a copy of the data into the repository.
    14. 14. Tips for writing DMPs• Seek advice - consult and collaborate• Consider good practice for your field• Base plans on available skills & support• Make sure implementation is feasible• Justify the decisions, particularly restrictions
    15. 15. Sources of guidance• ICPSR framework for a data management plan ent/dmp/framework.html• How to develop a data management and sharing plan• LSHTM Research Data Management support service
    16. 16. How DMP Online can helpDMP Online is a web-based tool to helpresearchers write Data Management Plansaccording to different funder requirements
    17. 17. How DMP Online works Create a plan based on relevant funder / institutional templates......and thenanswer the questions using the guidance provided
    18. 18. Thanks - any questions? For DCC guidance, tools and case studies see: us on twitter @digitalcuration and #ukdcc