RESEARCH WEEKLY: Getting to the science you need and want

(Mar. 8, 2016) Nobody has a greater stake in progress toward new treatments for severe mental illness than the patients, caregivers and professionals who live and work with psychiatric disease. Yet, as we noted in our February 23 Research Weekly, the end users of mental health science are typically the “last to know” about research findings that might improve our lives and work now.

The first-episode psychosis protocols promoted in the Recovery After Initial Schizophrenia Episode (RAISE) are a good example. The model developed with grants from the National Institute of Mental Health moved from clinical trial to implementation in just seven years. Publication of the promising findings was greeted with front-page stories and top-of-the-hour reports last year.

Yet aggressive, multidisciplinary, first-episode intervention practices have been widely used, studied and validated in other countries, for decades; the “breakthrough” of RAISE was that the model underwent clinical trials in the US, was validated on US soil and has now been funded and is being implemented here.

This is progress, to be sure. But the generations of American young adults who experienced first-episode psychosis when the model wasn’t well-known here are illustrations – some might say victims – of the practical implications when research does not reach its end users in a timely fashion.

The Research-Practice Gap
Addressing the International Society for CNS Clinical Trials and Methodology (ISCTM) in February, the Treatment Advocacy Center identified three ways that end users fall into the gap between research and practice:

• Research exists, but it’s aimed at someone other than us. This would be the case with findings released at professional conferences or published only in professional journals.
• We can find the research, but it’s not freely accessible. The recent news that scientists have “moved closer to understanding schizophrenia’s cause” was published in Nature. The article can currently be “rented” for 48 hours with printing and saving restrictions or purchased in a printable format for $32. “Pay walls” like these are common and can be prohibitive.
• We can access the research, but it’s not easily understood. The promising report that a 12-week course of omega-3 fish oil may reduce the risk of early psychotic symptoms progressing to schizophrenia is available, free in its entirely (and highly recommended) from Nature Communications. But is written for scientists, not lay readers, which makes it difficult to translate into action.

Bridging the Gap
In our comments to the ISCTM, we identified a few of the work-arounds available to members of the public who want to bridge the research-to-user gap for their own benefit.

• Make yourself part of the target audience. Just because you don’t subscribe to one of the journals publishing brain and behavior studies doesn’t mean you have to be left out of the news. Use Google Alerts to track the conditions, treatments, medications, policies and other topics important to you as an end user. Download apps that allow you to set up a custom news stream for schizophrenia, bipolar disorder, antipsychotics or whatever matters to you. The news will find you.
• Familiarize yourself with the Internet sources that make science publicly available. Hunt for abstracts and articles on Google Scholar, PubMed and similar browsers and databases. Use ClinicalTrials.gov to search for data about clinical studies of humans worldwide.
• Seek out the translators. Research Weekly summarizes one study a week of relevance to the most severe mental illnesses. Hogg Foundation’s MH Daily publishes a daily digest of blurbs and links to a variety of topics, including research. Subscribe to Research Weekly and other resources that translate science.

Useful information for patients, families, medical providers, the media and other members of the public falls into the science-to-practice gap. Building our own bridges is one way to shrink it.

References:
RESEARCH WEEKLY: The Why and Who of RAISE – Part 1
RESEARCH WEEKLY: Transparency on the Front Lines – Part 1 
RESEARCH WEEKLY: Fish Oil May Delay Onset of Schizophrenia