Determining stakeholder priorities for future research in the treatment of childhood autism: Early findings from a pcori pilot project
Tuesday, November 5, 2013
: 9:30 a.m. - 9:50 a.m.
Research Objective: This study is a pilot project funded by PCORI, the Patient Centered Outcomes Research Institute, to develop methods of stakeholder engagement that support patient-centered outcomes research. This study compares findings from discrete choice experiments and prioritization exercises that capture stakeholder contributions to the knowledge development process. Autism is an instructive context for methods development because of a wide diversity of stakeholder opinion. Study Design: A survey instrument, developed with stakeholder input, captured stakeholder priorities for future research by means of discrete choice experiments and prioritization exercises. The survey was fielded in a small group of autism stakeholders including adults with autism, parents, advocates, providers and researchers (n=10, an adequate sample for discrete choice experiments with repeated measures). For the experiments, research needs were characterized in terms of attributes that describe how stakeholders value future research. Hierarchical generalized linear models generate predicted probabilities that yield a ranking of future research needs and associated stakeholder characteristics to compare with direct prioritization exercises. Principal Findings: Future research needs in the treatment of childhood autism span treatment and methodological issues. Preliminary findings indicate that valued attributes include type of research need (intervention, methodological), type of intervention, study timeframe, setting, relevant population, outcomes, and costs. Conclusions: Conceptualizing future research for prioritizing is challenging. The pay-off includes quantitative measures of the attributes of future research investment that stakeholders value and of stakeholder differences of opinion. This method has the potential to highlight tensions between feasible next steps in science and top stakeholder priorities.
Public health or related research
Discuss standard practice and mixed methods strategies for engaging stakeholders with mental health needs.
Describe the process and challenges of constructing discrete choice experiments in future research for a broad group of stakeholders.
List the characteristics of future research investment in the treatment of childhood autism that stakeholders value and how values differ by stakeholder characteristics.
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: I have been the principal investigator of several federally funded grants including a PCORI grant focusing on developing methods to engage stakeholders focusing on autism. I have published on issues access to care for autism and other mental health services, and I am currectly chair-elect of the Mental Healt Section of the American Public Health Association.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.