From 2006 – 2008, families in a six-site nationwide study participated in a program to enhance parenting skills. Participating parents were monitored for “depression, health- and healthcare-related practices, and surrounding family conditions at baseline and 6-month intervals for up to 36 months.” Data from this study, available in a publicly-funded AHRQ/NIH database, was recently analyzed, and while participants began with reduced health literacy skills, “after 1 year of enhanced home visitation, vulnerable parents were better able to manage personal and family health and healthcare, especially if depressed.” While the sample size (2,572 parent/child dyads) was modest, the findings demonstrate one way we can improve parental health literacy levels even among depressed parents.

In addition to demonstrating the benefits of home visitation in improving health literacy, this study provides support for those that argue for making publicly-funded research data available to all. While no less important back then, health literacy was not the burning topic in 2006-2008 as it is today. Principal investigators had no idea that their work could or would be used in this way. If this data was locked behind a publisher’s pay-wall, this study might never have happened. Because it was publicly available, it could be re-used to test new ideas and ways to help people today.

Researchers must have open access to as many data sources as possible in order to find new ways to help those in need. Access must take precedence over ownership and control when the health outcomes of vulnerable populations (in this case, children) is at stake.

What data sources should be made accessible that are not available right now? Or, what publicly available data/studies/etc. would you like to see analyzed in new and creative ways? Tell us about it!

Reference:

1.    Smith SA, Moore EJ. Health Literacy and Depression in the Context of Home Visitation. Maternal and child health journal. Nov 26 2011.

Researchers with project proposals that have been scored by the National Institutes of Health (NIH) but not funded are invited to submit their abstracts. Also, projects that have been peer-reviewed but not funded by a NHC member patient advocacy organization may also register.