Massachusetts is working hard to figure out how to address privacy concerns and concerns about children in general as it builds a health information exchange and integrates mental health into electronic health records. Lisa Lambert, Executive Director of the Parent Professional Advocacy League (PPAL) of Massachusetts and an Advisory Council member of the CMHNetwork, shared with us this morning an illuminating report (pdf) prepared by PPAL detailing how families who have children with mental health challenges feel about privacy issues.
So what did parents report? Almost 9 out of 10 (86%) said they had the sole responsibility for coordinating their child's care. Only 14% had help from a therapist or primary care doctor. They said that good communication didn't happen a lot, but when it did they believed that it increased the quality of care more than access or follow through by a professional. They found that other parents were an excellent source of knowledge and an important link to resources. Yet, pediatricians do not often refer parents to family-run organizations like PPAL.
One of the clearest messages parents relayed is that they were reluctant to share mental health information with schools. Half said they did not trust the staff at their child's school with information about their child's mental health needs. Less than a third were willing to sign a release to let school staff speak with outside providers. This finding is pretty significant in a time when we have more children in the community, believe in a team approach and have the technology to more easily share information.
Very, very few studies ask parents what they think or to describe their experiences. We need more studies like this. Bravo PPAL!