Regarding the reform and revision of diagnostic systems
This letter was constructed by the Task Force on Diagnostic Alternatives of the American Psychological Association’s Div. 32 (the Society for Humanistic Psychology). This is an official statement of the Society for Humanistic Psychology and does not represent the position of the American Psychological Association or any of its other divisions or subunits.
Open letter regarding the reform and revision of diagnostic systems
Div. 32 Contacts:
Co-Chairs, World Health Organization Joint Task Force (JTF) on the ICD-11 for Mortality and Morbidity Statistics (ICD-11-MMS):
Stefanie Weber, MD
Head, Medical Vocabularies
German Institute for Medical Documentation and Information (DIMDI)
50676 Cologne, Germany
Director, Research Centre for Injury Studies
Flinders University, Adelaide Australia
GPO Box 2100 Adelaide SA 5001 Australia
Chair, DSM Steering Committee:
Paul S. Appelbaum, MD
Elizabeth K Dollard Professor of Psychiatry, Medicine & Law
New York State Psychiatric Institute
1051 Riverside Drive, #122
New York, NY 10032
Bruce N. Cuthbert, PhD
National Institute of Mental Health
NSC BG RM 6200
6001 Executive Boulevard
Rockville MD 20852
Dear Stefanie Weber, MD; James Harrison; Paul S. Appelbaum, MD; and Bruce N. Cuthbert, PhD:
In 2011, the British Psychological Society (BPS)1 and the Society for Humanistic Psychology2 responded to the American Psychiatric Association’s proposals for what would become the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5)3. Both professional bodies expressed concern that:
…clients and the general public are negatively affected by the continued and continuous medicalisation of their natural and normal responses to their experiences; responses which undoubtedly have distressing consequences which demand helping responses, but which do not reflect illnesses so much as normal individual variation...
That concern, among others, appeared in an Open Letter to the DSM-5 that was endorsed by over 15,000 mental health professionals and other individuals, as well as by over 50 professional organizations, including 15 additional divisions of the American Psychological Association.
Since then, we have seen the development of various diagnostic systems and related research frameworks. Among them are the National Institute of Mental Health’s new research framework, the Research Domain Criteria(RDoC) project,4 which aims to develop “new ways of classifying mental disorders based on behavioral dimensions and neurobiological measures,” and the Hierarchical Taxonomy of Psychopathology(HiTOP)5; as well as the ongoing revisions of the World Health Organization’s International Classification of Diseases and Related Health Problems (ICD)6 and the American Psychiatric Association’s DSM.7
Whilst there is much to be welcomed in these initiatives, we have scientific, conceptual and ethical concerns about each of them. The diagnostic categories proposed by these frameworks — the DSM, the ICD and newly proposed models such as the RDoC project — are based largely on social norms about what constitutes “normal” or desirable behavior or experience. Their definitions inevitably rely on subjective judgments, which are themselves grounded in cultural norms. As Thomas Insel8 has pointed out, despite billions of dollars of research investment, no biomarkers, confirmatory physical “signs” or pathognomonic evidence of biological causation have been discovered for the putative pathologies represented by the category labels within these systems. Many researchers have pointed out that psychiatric diagnoses are plagued by problems of reliability, validity, prognostic value and comorbidity. Significantly, diagnostic categories do not consistently predict response to medication or other interventions.9
One thing that these systems have in common is that they identify and locate problems within individuals. There is clear evidence that what one is exposed to, individually or as a collective, can have adverse impacts psychologically, behaviorally and emotionally — including for future generations. For many people, the main cause of their experiences is found in the circumstances of their lives. Locating problems within only individuals misses the relational context and undeniable social and structural influences on many of these problems. As psychologists, we are aware of the importance for mental health of people’s frameworks for understanding of the world, frameworks which are themselves the product of their experiences and lifelong learning. From an ethical standpoint, we should not minimize or ignore the social and structural origins of psychological suffering by, instead, re-interpreting that suffering as a result of deficits or disorder within the individuals affected by these problems. This has implications for care.
In practice, diagnoses are not conferred in a contextual vacuum. The criteria are not culture or value-free but instead reflect current normative social expectations. At the same time, psychiatric diagnoses have substantial impact on the social and occupational lives of those to whom they are applied. And reductionist biomedical diagnoses obscure the social determinants of our distress. This is important: as the United Nations Special Rapporteur concluded in 2017, we are under an international obligation to ensure that mental healthcare adequately addresses social contexts and relationships.10
We therefore recommend a paradigmatic revision of the empirical and conceptual frameworks used to think about mental health. A classification approach that pursues the neo-Kraepelinian goal (now nearly half a century old) of establishing biomarkers for individual conditions or symptoms would not constitute such a paradigm shift but rather an attempt to revitalize the current paradigm. A true paradigm shift would start with recognition of the overwhelming empirical evidence that the experiences we call mental illness are understandable and essentially “normal” human responses, and that psychosocial and structural factors such as inequity, abuse, poverty, housing insecurity, unemployment and trauma are the most robustly evidenced social determinants. Rather than applying preordained diagnostic categories to clinical populations, we believe that any empirical classification system should begin from the bottom up – starting with the specific concerns expressed by those seeking mental health services about their experiences, behaviour, problems, “symptoms” or “complaints.” Statistical analysis of community samples show that people’s experiences of distress do not map onto the categories contained in current or proposed classification systems. We would like to see the base unit of measurement changed from instances of putative disorders to occurrence of specific experiences identified by the individual as problems (e.g., hearing voices, feelings of social anxiety, feeling lonely, worry about the future, etc.). These would be more helpful too in terms of epidemiology. We also believe that in view of the central role played by social and structural determinants of distress (e.g., childhood trauma, socioeconomic disparities, racism, discrimination, assault, homophobia, homelessness and multiple deprivation), these should be centrally integrated within any diagnostic alternative, rather than included as optional or secondary considerations. These changes would also align with the growing person-centered, recovery-oriented and cultural/structural competency movements within psychiatry and medicine more broadly.
Some people find diagnostic labels helpful. There can be a variety of reasons for this. Within our current system, a diagnosis is often needed to access help. It also conveys the impression that the problems and their causes are understood, that others share similar experiences and that a suitable medical intervention is available. Unfortunately, this latter promise is often spurious. We believe that experientially based categories, reflecting the ways in which people themselves describe their experiences, would enable categorization for administrative purposes without some of the problematic assumptions and effects of the current and proposed systems. For the purposes of guiding individual treatment, individual formulations,11 collaboratively drawn up by the clinician and the service user, are more helpful. We therefore believe that alternatives to diagnostic frameworks exist, should be preferred and should be developed with as much investment of resource and effort as has been expended on revising existing approaches.
As diagnostic frameworks are developed and revised, we urge you to consider the following:
Standards and Guidelines for the Development of Diagnostic Nomenclatures and Alternatives in Mental Health Research and Practice
A diverse group of professionals, led by members of the American Psychological Association’s Div. 32, have published aspirational Standards and Guidelines12 to serve as a reference for the development of scientifically sound and ethically principled diagnostic nomenclatures and descriptive alternatives. The Standards and Guidelines address the purposes, development, content and scientific grounding of nomenclatures and alternative systems. They are “intended to represent best practice in the classification and description of emotional distress for multidisciplinary mental health professionals” (p. 2). The recommendations in the Standards and Guidelines should guide the current and future development of diagnostic systems, related taxonomies, nomenclatures and alternative approaches.
The considerations below draw from the principles of the Standards and Guidelines for the purposes of emphasizing some of the most crucial issues at present. More specifically, for the present purposes, bearing in mind the diagnostic systems and alternatives currently in use and in development across the world, particular attention should be drawn to the following issues:
Multidisciplinary mental health professionals have, for a long time, advocated for the integration of psychological, subjective or experiential phenomena into nomenclatures for mental distress, and some have advocated for alternative descriptive systems that address lived experience . Given the fact that all clinical assessments and diagnoses in the field of mental health rely on verbal reports and behavioral observations (rather than biological tests), a serious, collegiate and comprehensive review of this approach could yield major benefits. Of central and crucial importance is documenting – and addressing — the social and structural determinants of psychological distress, rather than limiting diagnosis to the individuals whose lives are disrupted by them. These determinants are just as important as and are already supported by evidence that is more empirically robust than the pathognomonic biogenetic factors (e.g., neurocircuitry) that still elude scientists who hope that they will hasten the next taxonomic revolution.
As a next step to address these concerns, we request an online, telephone or in-person meeting to discuss these issues in more depth. We look forward to your response.
Peter Kinderman, PhD; University of Liverpool, past president, British Psychological Society
Brent Robbins, PhD; chair, department of psychology, Point Park University
Frank Farley PhD; professor, Temple University; former president, American Psychological Association
Sarah Kamens, PhD; assistant professor of psychology, SUNY College at Old Westbury
Justin Karter; PhD candidate, University of Massachusetts Boston
Anne Cooke; clinical psychologist and principal lecturer, Canterbury Christ Church University
David Elkins PhD; professor emeritus, Pepperdine University.
Theopia Jackson, PhD; chair, department of humanistic and clinical psychology, Saybrook University
Members of the Task Force on Diagnostic Alternatives: American Psychological Association’s Div. 32 (Society
for Humanistic Psychology)
Consultants: Ron Bassman, Claire Chang, Lisa Cosgrove, Faith Forgione, Lois Holzman, Dayle Jones, Eric Maisel, Jeanne Marecek, Douglas Porter, Jeffrey Rubin, Kirk Schneider, Sarah Schulz, Sami Timimi
National Alliance of Professional Psychology Providers (NAPPP)
Psychologists for Social Responsibility (PsySR)
East Side Institute for Group and Short Term Psychotherapy
APA's Div. 39, Section IX: Psychoanalysis for Social Responsibility
Association for Specialist in Group Work Division of the American Counseling Association
APA's Div. 42 (Psychologists in Independent Practice)
Association for Humanistic Counseling division of the American Counseling Association
National Latinx Psychological Association
Association of Black Psychologists, Inc.
APA's Div. 39 (Society for Psychoanalysis and Psychoanalytic Psychology)
Footnotes and references
- British Psychological Society. (2011). Response to the American Psychiatric Association: DSM-5 development.Leicester, UK: Author. Retrieved from http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf
- Kamens, S. R., Elkins, D. N., & Robbins, B. D. (2017). Open letter to the DSM-5 Task Force and the American Psychiatric Association. Journal of Humanistic Psychology, 57, 675-687. Originally posted online in 2011 at http://www.ipetitions.com/petition/dsm5/
- National Institute for Mental Health NIMH Research Domain Criteria (RDoC). National Institute of Mental Health. http://www.nimh.nih.gov/research-priorities/rdoc/index.shtml
- Kotov, R., Krueger, R. F., Watson, D., Achenbach, T. M., Althoff, R. R., Bagby, R. M., ... & Eaton, N. R. (2017). The Hierarchical Taxonomy of Psychopathology (HiTOP): A dimensional alternative to traditional nosologies. Journal of Abnormal Psychology, 126(4), 454. https://www.apa.org/pubs/journals/features/abn-abn0000258.pdf
- Moran, M. (2017, August 14) Process for updating DSM-5 is up and running. Psychiatric News.American Psychiatric Association. Retrieved from https://doi.org/10.1176/appi.pn.2017.9a4
- Insel, T.R. (2013, April 29). Transforming Diagnosis.National Institute of Mental Health. http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml
- Moncrieff, J (2007) The Myth of the chemical cure: a critique of psychiatric drug treatment. Basingstoke, Hampshire: Palgrave MacMillan.
- Pūras, D. (2017). Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.UN General Assembly. Retrieved from http://ap.ohchr.org/documents/dpage_e.aspx?si=A/HRC/35/21
- British Psychological Society. (2011) Good practice guidelines on the use of psychological formulation.Leicester, UK: Author. Retrieved from https://www1.bps.org.uk/system/files/Public%20files/DCP/cat-842.pdf
- Kamens, S. R., Cosgrove, L., Peters, S. M., Jones, N., Flanagan, E., Longden, E., ... & Lichtenberg, P. (2018). Standards and guidelines for the development of diagnostic nomenclatures and alternatives in mental health research and practice. Journal of Humanistic Psychology. Online before print at: http://journals.sagepub.com/doi/abs/10.1177/0022167818763862
- Kendell R., & Jablensky A. (2003). Distinguishing between the validity and utility of psychiatric diagnoses. American Journal of Psychiatry, 160, 4-12.
- Cosgrove L., & Krimsky, S. (2012) A comparison of DSM-IV and DSM-5 panel members' financial associations with industry: a pernicious problem persists. PLoS Med, 9(3), e1001190. doi: 10.1371/journal.pmed.1001190.
- Als-Nielsen, B., Chen, W., Gluud, C., & Kjaergard, L. L. (2003). Association of funding and conclusions in randomized drug trials: a reflection of treatment effect or adverse events?. JAMA, 290(7), 921-928.
- Choudhry, N. K., Stelfox, H. T., & Detsky, A. S. (2002). Relationships between authors of clinical practice guidelines and the pharmaceutical industry. JAMA, 287(5), 612-617.
- Grilli, R., Magrini, N., Penna, A., Mura, G., & Liberati, A. (2000). Practice guidelines developed by specialty societies: the need for a critical appraisal. The Lancet, 355(9198), 103-106.
- Institute of Medicine. (2009). Conflict of interest in medical research, education, and practice. Washington, DC: National Academies Press.
- Institute of Medicine. (2011). Clinical practice guidelines we can trust. Washington, DC: National Academies Press.
- Cooke, A. (2017). Understanding psychosis and schizophrenia: why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality… and what can help. British Psychological Society.Retrieved from www.understandingpsychosis.net
- Johnstone, L., Boyle, M., Cromby, J., Dillon, J., Harper, D., Kinderman, P., ... & Read, J. (2018). The power threat meaning framework: towards the identification of patterns in emotional distress, unusual experiences and troubled or troubling behaviour, as an alternative to functional psychiatric diagnosis. Leicester, UK: British Psychological Society.
- Flanagan, E. H., Davidson, L., & Strauss, J. S. (2010). The need for patient-subjective data in the DSM and the ICD. Psychiatry, 73, 297-307.
- Kinderman, P., & Allsopp, K. (2018). Non-diagnostic recording of mental health difficulties in ICD-11. The Lancet Psychiatry, 5(12), 966. doi: 10.1016/S2215-0366(18)30394-8
- Allsopp, K., & Kinderman, P. (2017). A proposal to introduce formal recording of psychosocial adversities associated with mental health using ICD-10 codes. The Lancet Psychiatry, 4(9), 664-665.
- Royal College of Psychiatrists (2017). Using formulation in general psychiatric care: Good practice. Royal College of Psychiatrists. London. Retrieved from https://www.rcpsych.ac.uk/usefulresources/publications/collegereports/op/op103.aspx