Recommendations to improve the patient experience and avoid bias when prenatal screening/testing.

While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.

Using Personal Digital Assistants to improve self-care in oral health.

We conducted a pilot project to evaluate the potential of Personal Digital Assistant (PDA) technologies to improve the oral health of people with mild to moderate intellectual disabilities, chronic health problems and a long-standing history of poor oral health self-care. Oral health video and audio materials were prepared and transferred to PDAs. Patients were trained in the use of the PDAs at a regular dental appointment and the utilization of the PDA and any change in oral health status was tracked over the next six months. More than half of the 36 patients reported problems in keeping the PDAs functioning properly (mainly problems of keeping the batteries charged) for the duration of the project and 11 patients dropped out of the study. Ten of the remainder (40%) achieved improvement in at least three areas of oral health. The pilot project potentially brings a range of health promotion activities within the reach of people with limited health literacy which may produce better self-management of chronic health conditions.