Portal Now Open for Making DSM a ‘Living Document’

Proposals for changes to DSM-5 can now be submitted at a publicly available portal on the APA website.

David Hathcox

It is a first step toward creating the “living document” that the DSM-5 Task Force envisioned for the future of DSM, to keep up with emerging scientific data about mental illness and to revise the manual based on that new data in a timely, less costly, and less unwieldy way than in the past.

“Because of the technical constraints associated with updating DSM at fixed intervals of time as in the past, we were prevented from incorporating new scientific knowledge when it became available,” said Michael First, M.D., editorial and coding consultant for DSM-5. “Prior to DSM-5, the last major revision was in 1994—a 19-year gap during which a lot happened scientifically. That last update resulting in DSM-5 required an enormous, multi-year effort to re-assess the entire document. It was a necessity, but it was a real downside.”

Now, with the digital age, changes can be made incrementally, as new information emerges, First said.

At the newly created portal, researchers, clinicians, and members of the public can submit proposals for changes to DSM-5, defined as the addition, deletion, or modification of diagnostic categories or criteria (including subtypes or specifiers) or the text. Visitors to the portal are guided through steps to submit proposals for the following specific kinds of revisions:

• Changes to an existing diagnostic criteria set that would markedly improve its validity.

• Changes to an existing diagnostic criteria set that would markedly improve reliability without an undue reduction in validity.

• Changes to an existing diagnostic criteria set that would markedly improve clinical utility without an undue reduction in validity or reliability.

• Changes to an existing diagnostic criteria set that would substantially reduce deleterious consequences associated with the criteria set without a reduction in validity.

• Addition of a new diagnostic category or specifier.

• Deletion of an existing diagnostic category or specifier/subtype.

• Corrections and clarifications, including changes aimed at improving the understanding and application of an ambiguous diagnostic criterion, specifier, or text.

Visitors submitting changes should include their name and contact information, institutional affiliation, and area of research interest. For each type of revision, visitors will be asked to provide summary evidence regarding the validity, reliability, clinical utility, and potential deleterious consequences of making the proposed change. A detailed description of the kinds of supporting information that are necessary to include with proposed revisions is available in PDF format at the DSM portal.

Past APA President Paul Appelbaum, M.D., is chair of the DSM Steering Committee appointed by APA’s Board of Trustees to guide the DSM revision process. In an interview with Psychiatric News, he emphasized that the threshold for acceptance of revisions will be high.

“In thinking through the process, the steering committee was balancing two important considerations,” Appelbaum said. “There is a value, first, in stability of psychiatric diagnoses—a value to clinicians who don’t have to learn to use new criteria too regularly, a value to patients who won’t be subject to their diagnoses changing in the midst of treatment, and a value to researchers who have already accumulated bodies of data based on existing diagnostic criteria.

“On the other hand, we all recognize that current diagnoses are imperfect in some ways,” Appelbaum said. “They are meant to be the best we can do at any point in time, always hoping to do better with increasingly valid diagnostic criteria sets. We want the process of revision to respect the importance of stability, while also being receptive to clear evidence that changes are warranted by increasing scientific knowledge.”

Appelbaum added that the steering committee did not want the revision process to be used for reopening debates that were decided during the development of DSM-5 “unless people have new evidence on one side or the other.”

That is, proposed revisions that had been rejected as part of the DSM-5 process must include substantively new and better research evidence. “For our purposes, DSM-5 is the starting point,” he said. “We want to move forward from there in an iterative way.”

The process for realizing the goal of a “living document” began in spring 2013 when then APA President Jeffrey Lieberman, M.D., appointed the Work Group on the Future of DSM, with Appelbaum as its chair. The work group was composed of 12 APA members who had been involved with the development of DSM-5; David Kupfer, M.D., who had been the chair of the DSM-5 Task Force, served as a consultant.

The work group developed a report that was approved by the Board in March 2014. It laid out a plan for submitting, evaluating, and incorporating proposed revisions and recommended the appointment of the DSM Steering Committee to guide the process. Appelbaum was asked to chair the steering committee, which includes individuals with expertise in psychiatric nosology, psychiatric research, clinical psychiatry, and DSM, as well as members of the APA Board of Trustees and Assembly.

Five standing review committees with approximately six members each will work with the steering committee to review proposals for revisions that are received at the new portal, consider the supporting evidence, and undertake literature reviews and expert consultations as needed. (Steering and review committee members have been vetted for conflicts of interest using the same standards as DSM-5.) Each review committee will cover much broader domains of psychiatric diagnoses than did the DSM-5 work groups. Proposals with sufficient supporting evidence will be posted for public comment.

The recommendations of the steering committee along with a summary of public comments will be forwarded to the APA Board of Trustees for approval.

A description of this process was published in November 2016 in JAMA Psychiatry in the article “The Future of the DSM Implementing a Continuous Improvement Model.” It was written by First, Kenneth Kendler, M.D., and Ellen Liebenluft, M.D. Kendler and Liebenluft are vice chairs of the steering committee.

“There is now a process in place,” Appelbaum told Psychiatric News. “We are looking to the field to propose changes. They should know that the standard for acceptance will be high, and that we will very much be looking forward to receiving evidence that supports the changes.”

First echoed that comment. “The door is now open for changes, a little at a time, with a process that will be very careful to include only those revisions that are really solid,” he said. ■