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Suzanne Bakken – Policy and Advocacy Related to Informatics Approaches to Underserved Populations July 23, 2010

Posted by Eric Rivedal in SINI2010.

“If we’re going to make informatics part of the solution for decreasing health disparities in underserved populations then policy and advocacy efforts are needed.” She begins her lecture with a definition of Nursing Informatics that emphasizes that it supports patients, nurses, and other providers. Advocacy is a core competency for a nurse informaticist.

Underserved populations are a broader group than you might think – there are many interpretations and it doesn’t necessarily mean low income.  She presents a case study regarding the use of a Continuity of Care Document (CCD) for persons living with HIV/AIDS. She frames the study by saying it’s really about the interactions between persons (patients) and caregivers (clinicians and case workers). Her population is in New York City and does meet low income criteria for a special program at NY Presbyterian. There was an interest in sharing information about the patients between the various caregivers who participate in the program.

A specialized CCD document format was agreed upon for what data were to be shared.  It was called My Health Profile

  • Diagnoses
  • Medications
  • Lab Results
  •  Procedures / Imaging
  • Allergies / ADRs
  • Social History / Family History

A variety of data sources were used to obtain a limited data set that is only available intermittently. While the data were limited, they were sufficient to help patients obtain care and make their care known to subsequent providers.

As the program has moved forward, more data sources have been identified, expanding the scope of the CCD. As more data are available, evidence permits advocacy. She points out that having a codified data set allowed better use of the data and gave her a better tool for influencing policy.

The RE-AIM framework (Reach, Efficacy/Effectiveness, Adoption, Implementation, and Maintenance) (by Glasgow, adapted by Bakken & Roland) was utilized to begin a program of influence. She points out that unintended consequences can be positive as well as negative. In the case of My Health Profile, some unintended positive affects occurred.

There was a suspicion among staff that PLWH will be unwilling to have data electronically available via the CCD. They met with focus groups who were willing to have data available through CCD for both personal use and especially emergency situations. After a survey, they found that almost 100% of patients were willing to share data for their own care but were less willing to share data for aggregate reporting that would help others.  She points out that there was an opposing study that showed their patients were less willing to share data.

The introduction of this information to patients made them curious, and in some cases anxious. They had questions about their own care and needed teaching regarding the information that was made available. Further study revealed the types of needs that existed among the population. Viral Load was a particularly interesting topic to patients. This led to some possible strategies;

  • Don’t display some types of data to prevent those information needs
  • Sequester data for a period of time
  • Integrate informatics strategies to deliver information at the point of need

There continue to be concerns among providers about patients seeing their data before the clinician sees their data. Dr. Bakken believes patients should have access to their own health data as soon as it’s available; but we need to deliver the information they need along with the data.

The evaluation findings showed that some high volume users and key informants found that they felt much better for having their data at hand. (Anecdotally, this generated tears of joy from the evaluators).

For future enhancements, they will move the program from the stand-alone CCD system to NYCLIX. This will provide better access and a more robust data set available. However, patient direct access to this data is not typical. They plan to implement a portal for patient access. There is also no access to the NYCLIX RHIO for case managers – the RHIO is really for those who generate data.

This means that advocacy is needed to assure access for those case workers. Patients will be the strongest voice in this discussion. Nursing informatics can be part of the solution to disparities in health care. But Advocacy is a key nursing informatics competency. We should all look for opportunities to research and generate data that supports policy change for the better.



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