MHRN Guidelines Regarding Sharing and Use of Multi-Site Data
Aims
These guidelines regarding use of data from multi-site MHRN projects aim to:
- Maximize the scientific and public health benefit of data resources supported by MHRN funding
- Protect the privacy of members/patients served by MHRN health systems
- Appropriately address concerns of MHRN health systems regarding proprietary business information and reputational risk
- Promote collaboration and maintain mutual respect among MHRN researchers
- Support development of new analytic and statistical methods
- Facilitate training and career development for early-career researchers
We recognize health records data belong to our partner health systems and the members or patients they serve. MHRN investigators and research centers serve as stewards of those data, with responsibilities to protect member or patient privacy, ensure scientific integrity, and maximize public health benefit. In that stewardship role, MHRN investigators representing each participating health system have authority to include or exclude data from that health system in any secondary analysis or publication.
Sharing Data Within Multi-Site Projects
Multi-Site MHRN projects often involve extraction of data from research data warehouses and/or other health system records, processing those data into a project-specific format, and merging data from each participating health system into a combined analytic dataset.
In general, each participating site contributing data to a multi-site project should receive and may retain a copy of the combined analytic dataset as soon as feasible and no later than the end of the project funding period.
Sharing of data among all participating sites will require that all sites execute a reciprocal data use or data sharing agreement following the standard template of the Healthcare Systems Research Network.
Manuscripts Using Data from Multi-Site Projects
A potential lead author planning a manuscript using data from a multi-site project should consult early in the planning process with the responsible investigator from each site contributing to those data. That lead author should provide a brief description of the research question or hypothesis and a summary of the planned analysis. The lead author should, whenever feasible, offer the responsible site investigator or their designate the opportunity to participate as co-author. Responsible site investigators should raise any concerns regarding scientific validity, patient/member privacy, disclosure of proprietary health system information, or damage to health system reputation. Each responsible site investigator has final authority regarding inclusion or exclusion of site data from presentation and publication.
If the number of authors allowed for any manuscript is limited, then co-authorship should be determined by level of scientific contribution to that publication or presentation.
If no investigator from a data-contributing site is participating as co-author, then the lead author should again consult with the responsible investigator from that site prior to manuscript submission to identify any concerns regarding scientific validity, patient/member privacy, disclosure of proprietary health system information, or damage to health system reputation.
Responsible site investigators are encouraged to offer authorship opportunities to early-career investigators.
New Proposals or Projects Using Existing Data from Previous Multi-Site Projects
A potential principal investigator author planning a new project or grant proposal using existing data from a previous multi-site project should consult early in the planning process with the responsible investigator from each site contributing to those data. That principal investigator should provide a brief description of the research question or hypothesis and a summary of the planned analysis. Responsible site investigators should raise any concerns regarding scientific validity, patient/member privacy, disclosure of proprietary health system information, or damage to health system reputation. Each responsible site investigator has final authority regarding inclusion or exclusion of site data from the proposal or project.
In general, the principal investigator should offer the responsible site investigator or their designate the opportunity to collaborate in the new project – acknowledging that may not be feasible to provide funding for that collaboration.
Potential lead authors for any manuscripts should follow the guidelines above.
Responsible site investigators are encouraged to offer collaboration opportunities to early-career investigators.
Acknowledging MHRN Support in Presentations and Publications
All manuscripts using data or resources developed with support from the MHRN cooperative agreements should acknowledge that support. For example: “Extraction and organization of these data was supported by cooperative agreement U19 MH121738.”
Manuscripts should also acknowledge our privilege of using member or patient records for research. For example: “The authors acknowledge and appreciate the privilege of access to health records data used in this study, without which this research would not be possible.”
Responsibilities
Regarding manuscripts:
- An investigator hoping to lead a new manuscript should contact the responsible investigator(s) from each site that might contribute data, as early as possible in the planning process. This initial contact should invite participation as a co-author and ask about any concerns regarding member/patient privacy or disclosure of information that health systems would consider proprietary or sensitive.
- Responsible investigators receiving such an initial query should respond clearly and promptly regarding participation as a co-author and potential member/patient or health system concerns.
- If a manuscript does not include at least one co-author from each site contributing data, the lead author should contact the responsible investigator(s) from sites without co-authors prior to submission to ask again about any concerns regarding member/patient privacy or disclosure of information that health systems would consider proprietary or sensitive.
- Responsible investigators receiving such a pre-submission query should respond clearly and promptly regarding potential member/patient or health system concerns.
Regarding grant applications or other funding proposals:
- An investigator hoping to lead a new grant application or funding proposal should contact the responsible investigator(s) from each site that might contribute data, as early as possible in the planning process. This initial contact should ask about any concerns regarding member/patient privacy or disclosure of information that health systems would consider proprietary or sensitive.
- Responsible investigators receiving such an initial query should respond clearly and promptly regarding potential member/patient or health system concerns.
- The responsibilities described above apply to any resulting manuscripts.