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DMP health sciences

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Presentation given by Sarah Jones at a seminar run by LSHTM on 6th November 2012. http://www.lshtm.ac.uk/newsevents/events/2012/11/developing-data-management-expertise-in-research---half-day-event
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Data Management Planning for the health sciences Sarah Jones Digital Curation Centre [email protected]
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Page 1: DMP health sciences

Data Management Planning for the health sciences

Sarah JonesDigital Curation Centre

[email protected]

Page 2: DMP health sciences

What is a Data Management Plan?

A brief statement outlining how data will be created, managed, shared and preserved, explaining decisions and justifying any restrictions that need to be applied.

Often submitted as part of grant applications, but useful whenever you’re creating data.

Page 3: DMP health sciences

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...

Page 4: DMP health sciences

Who requires a DMP or equivalent?

http://researchonline.lshtm.ac.uk/208596/1/Funder_Requirements_Analysis.pdf

Page 5: DMP health sciences

Cancer Research UK The 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

Page 6: DMP health sciences

Medical Research CouncilThe MRC provides a template with the following sections:

0. Proposal name

1. Description of the data

2. Data collection / generation

3. Data management, documentation and curation

4. Data security & confidentiality of potentially disclosive personal information

5. Data sharing and access

6. Responsibilities

7. Relevant policies on data sharing and data security

8. Author of this Data Management Plan (Name) and contact details

Page 7: DMP health sciences

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?

Page 8: DMP health sciences

Five common themes in DMPs

1. Provide a description of the data

2. Explain how the data will be collected & documented

3. Outline the plans for data sharing

4. Justify any restrictions on sharing

5. State the long-term preservation plan

Page 9: DMP health sciences

Provide a description of the data

Why 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.

n.b. EXPLANATIONS AND EXAMPLES COURTESY OF NIH AND ICPSR

e.g. The proposed research will include data from approximately 500 subjects being screened for three bacterial sexually transmitted diseases (STDs) at an inner city STD clinic. The final dataset will include self-reported demographic and behavioural data from interviews with the subjects and laboratory data from urine specimens provided.

Page 10: DMP health sciences

Explain how the data will be collected

Why 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 as SPSS system files with DDI XML documentation. The codebook will contain information on study design, sampling methodology, fieldwork, variable-level detail, and all information necessary for a secondary analyst to use the data accurately and effectively.

Page 11: DMP health sciences

Outline the plans for data sharing

Why 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 documentation available to users under a data-sharing agreement that provides for: (1) a commitment to using the data only for research purposes and not to identify any individual participant; (2) a commitment to securing the data using appropriate computer technology; and (3) a commitment to destroying or returning the data after analyses are completed.

Page 12: DMP health sciences

Justify any restrictions on sharing

Why 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, we will be collecting identifying information. Even though the final dataset will be stripped of identifiers prior to release for sharing, we believe that there remains the possibility of deductive disclosure of subjects with unusual characteristics. Thus, we will make the data and associated documentation available to users only under a data-sharing agreement.

Page 13: DMP health sciences

State the long-term preservation plan

Why 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.

Page 14: DMP health sciences

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

Page 15: DMP health sciences

Sources of guidance

• ICPSR framework for a data management plan

www.icpsr.umich.edu/icpsrweb/content/datamanagement/dmp/framework.html

• How to develop a data management and sharing planwww.dcc.ac.uk/resources/how-guides/develop-data-plan

• LSHTM Research Data Management support servicehttp://blogs.lshtm.ac.uk/rdmss

Page 16: DMP health sciences

How DMP Online can help

DMP Online is a web-based tool to help researchers write Data Management Plans according to different funder requirements

https://dmponline.dcc.ac.uk

Page 17: DMP health sciences

How DMP Online worksCreate a plan

based on relevant funder / institutional templates...

...and then answer the questions using the guidance provided

Page 18: DMP health sciences

Thanks - any questions?

For DCC guidance, tools and case studies see:www.dcc.ac.uk/resources

Follow us on twitter @digitalcuration and #ukdcc


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