Tag: NREPP: National Registry of Evidence-Based Programmes and Practices

What was the National Registry of Evidence-Based Programmes and Practices (US)?

Published on by Andrew MarshallLeave a comment

Introduction

National Registry of Evidence-Based Programmes and Practices (NREPP) Logo.

The National Registry of Evidence-based Programmes and Practices (NREPP) was a searchable online database of interventions designed to promote mental health or to prevent or treat substance abuse and mental disorders.

The registry was funded and administered by the Substance Abuse and Mental Health Services Administration (SAMHSA), part of the US Department of Health and Human Services. The goal of the Registry was to encourage wider adoption of evidence-based interventions and to help those interested in implementing an evidence-based intervention to select one that best meets their needs.

The NREPP website was phased out in 2018.

Background

In the behavioural health field, there is an ongoing need for researchers, developers, evaluators, and practitioners to share information about what works to improve outcomes among individuals coping with, or at risk for, mental disorders and substance abuse. Discussing how this need led to the development of NREPP, Brounstein, Gardner, and Backer (2006) write:

It is important to note that not all prevention programs work. Still other programs have no empirically based support regarding their effectiveness. […] Many others have empirical support, but the methods used to generate that support are suspect. This is another reason to highlight the need for and use of scientifically defensible, effective prevention programs. These are programs that clearly demonstrate that the program was well implemented, well evaluated, and produced a consistent pattern of positive results.

The focus of NREPP is on delivering an array of standardised, comparable information on interventions that are evidence based, as opposed to identifying programmes that are “effective” or ranking them in effectiveness. Its peer reviewers use specific criteria to rate the quality of an intervention’s evidence base as well as the intervention’s suitability for broad adoption. In addition, NREPP provides contextual information about the intervention, such as the population served, implementation history, and cost data to encourage a realistic and holistic approach to selecting prevention interventions.

As of 2010, the interventions reviewed by NREPP have been implemented successfully in more than 229,000 sites, in all 50 States and more than 70 countries, and with more than 107 million clients. Versions of ura review process and rating criteria have been adopted by the National Cancer Institute and the Administration on Aging.

The information NREPP provides is subject to certain limitations. It is not an exhaustive repository of all tested mental health interventions; submission is a voluntary process, and limited resources may preclude the review of some interventions even though they meet minimum requirements for acceptance. The NREPP home page prominently states that “inclusion in the registry does not constitute an endorsement.”

Submission Process

NREPP holds an open submission period that runs 01 November through 01 February. For an intervention to be eligible for a review, it must meet four minimum criteria:

  • The intervention has produced one or more positive behavioural outcomes (p ≤ .05) in mental health, mental disorders, substance abuse, or substance use disorders use among individuals, communities, or populations.
  • Evidence of these outcomes has been demonstrated in at least one study using an experimental or quasi-experimental design.
  • The results of these studies have been published in a peer-reviewed journal or other professional publication, or documented in a comprehensive evaluation report.
  • Implementation materials, training and support resources, and quality assurance procedures have been developed and are ready for use by the public.

Once reviewed and added to the Registry, interventions are invited to undergo a new review four or five years after their initial review.

Review Process

The NREPP review process consists of two parallel and simultaneous review tracks, one that looks at the intervention’s Quality of Research (QOR) and another that looks at the intervention’s Readiness for Dissemination (RFD). The materials used in a QOR review are generally published research articles, although unpublished final evaluation reports can also be included. The materials used in an RFD review include implementation materials and process documentation, such as manuals, curricula, training materials, and written quality assurance procedures.

The reviews are conducted by expert consultants who have received training on NREPP’s review process and rating criteria. Two QOR and two RFD reviewers are assigned to each review. Reviewers work independently, rating the same materials. Their ratings are averaged to generate final scores.

While the review process is ongoing, NREPP staff work with the intervention’s representatives to collect descriptive information about the intervention, such as the program goals, types of populations served, and implementation history.

The QOR ratings, given on a scale of 0.0 to 4.0, indicate the strength of the evidence supporting the outcomes of the intervention. Higher scores indicate stronger, more compelling evidence. Each outcome is rated separately because interventions may target multiple outcomes (e.g. alcohol use, marijuana use, behaviour problems in school), and the evidence supporting the different outcomes may vary. The QOR rating criteria are:

  • Reliability of measures.
  • Validity of measures.
  • Intervention fidelity.
  • Missing data and attrition.
  • Potential confounding variables.
  • Appropriateness of analysis.

The RFD ratings, also given on a scale of 0.0 to 4.0, indicate the amount and quality of the resources available to support the use of the intervention. Higher scores indicate that resources are readily available and of high quality. These ratings apply to the intervention as a whole. The RFD criteria are:

  • Availability of implementation materials.
  • Availability of training and support resources.
  • Availability of quality assurance procedures.

Reviewers

QOR reviewers are required to have a doctoral-level degree and a strong background and understanding of current methods of evaluating prevention and treatment interventions. RFD reviewers are selected from two categories: direct services experts (including both providers and consumers of services), or experts in the field of implementation. Direct services experts must have previous experience evaluating prevention or treatment interventions and knowledge of mental health or substance abuse prevention or treatment content areas.

Products and Publications

NREPP publishes an intervention summary for each intervention it adds to the Registry. The summaries, which are accessed through the Registry’s search engine, contain the following standardised information:

  • A brief description of the reviewed intervention, including targeted goals and theoretical basis.
  • Study populations (age, gender, race/ethnicity).
  • Study settings and geographical locations.
  • Implementation history.
  • Funding information.
  • Comparative evaluation research conducted with the intervention.
  • Adaptations.
  • Adverse effects.
  • List of studies and materials reviewed.
  • List of outcomes.
  • Description of measures and key findings for each outcome.
  • Research design of the studies reviewed.
  • Quality of Research and Readiness for Dissemination ratings.
  • Reviewer comments (Strengths and Weaknesses).
  • Costs.
  • Replication studies.
  • Contact information.

NREPP also maintains an online Learning Centre. Offerings include learning modules on implementation and preparing for NREPP submission; a research paper on evidence-based therapy relationships; and links to screening and assessment tools for mental health and substance use.

Predecessor System

The registry originated in 1997 and has gone through several changes since then. The predecessor to today’s NREPP was the National Registry of Effective Prevention Programmes (later renamed the National Registry of Effective Programmes and Practices), which was developed by SAMHSA’s Centre for Substance Abuse Prevention as part of the Model Programmes initiative. Procedures under this earlier registry were developed to review, rate, and designate programmes as Model, Effective, or Promising. Based on extensive input from scientific communities, service providers, expert panels, and the public, the procedures were revised. Reviews using the new NREPP system began in 2006, and the redesigned Web site debuted in March 2007.

Phase out in 2018

According to an email from SAMHSA:

“SAMHSA is committed to advancing the adoption of evidence-based interventions related to mental health and substance use. Consistent with the January 2018 announcement from the Assistant Secretary for Mental Health and Substance Use related to discontinuing the National Registry of Evidence-based Programs and Practices (NREPP), SAMHSA has now phased out the NREPP website, which has been in existence since 1997. In April 2018, SAMHSA launched the Evidence-Based Practices Resource Center (Resource Center) that aims to provide communities, clinicians, policy makers, and others in the field with the information and tools they need to incorporate evidence-based practices into their communities or clinical settings. The Resource Center contains a collection of science-based resources; however, it does not replace NREPP and does not contain all of the resources that were previously available on NREPP.

“The Resource Center is a component of SAMHSA’s new comprehensive approach to identify and disseminate clinically sound and scientifically based policy, practices, and programs. Under this new approach, we are continuing to develop and add additional resources to the Resource Center as they become available. In the meantime, please use our Resource Center as well as the SAMHSA Store to find information on evidence-based practices and other resources related to mental health and substance use. For products and resources not developed by SAMHSA, please contact the developers for more information.”

Further Reading

  • Hennessy, K., Finkbiner, R., & Hill, G. (2006) The National Registry of Evidence-Based Programs and Practices: A Decision-Support Tool to Advance the Use of Evidence-Based Services. International Journal of Mental Health. 35(2), pp.21-34. doi: 10.2753/IMH0020-7411350202.
  • Brounstein, P. J., Gardner, S. E., & Backer, T. (2006) Research to Practice: Efforts to Bring Effective Prevention to Every Community. Journal of Primary Prevention. 27(1), pp.91-109. doi: 10.1007/s10935-005-0024-6. PMID 16421654. These criteria and the accompanying rating anchors are unique to NREPP but share common elements with the types of standards used by other Federal agencies to assess evidence-based programmes.
  • Official Website (Phased Out in 2018): https://www.nrepp.samhsa.gov/.
  • SAMHSA Evidence-based Practices Resource Centre: https://www.samhsa.gov/resource-search/ebp.
  • SAMHSA: https://www.samhsa.gov/.

What is the National Alliance on Mental Illness?

Published on by Andrew Marshall4 Comments

Introduction

The National Alliance on Mental Illness (NAMI) is a United States-based advocacy group originally founded as a grassroots group by family members of people diagnosed with mental illness.

NAMI identifies its mission as “providing advocacy, education, support and public awareness so that all individuals and families affected by mental illness can build better lives” and its vision as “a world where all people affected by mental illness live healthy, fulfilling lives supported by a community that cares”. NAMI offers classes and trainings for people living with mental illnesses, their families, community members, and professionals, including what is termed psychoeducation, or education about mental illness. NAMI holds regular events which combine fundraising for the organization and education, including Mental Illness Awareness Week and NAMIWalks.

Headquartered in Arlington, Virginia, NAMI has around 1,000 state and local affiliates and is represented in all 50 US states, Washington, D.C., and Puerto Rico. NAMI is funded primarily through pharmaceutical company donations. Additional funding comes from individual donors, as well as sponsorships and grants. NAMI publishes a magazine around twice a year called The Advocate. NAMI also runs a HelpLine five days a week, which is funded in part by pharmaceutical companies Janssen and Lundbeck.

Brief History

NAMI was founded in Madison, Wisconsin, by Harriet Shetler and Beverly Young. The two women both had sons diagnosed with schizophrenia, and “were tired of being blamed for their sons’ mental illness”. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health led to the formation of the National Alliance for the Mentally Ill in 1979. In 1997, the legal name was changed to the acronym NAMI by a vote of the membership due to concerns that the name National Alliance for the Mentally Ill did not use person-first language. In 2005, the meaning of NAMI was changed to the backronym National Alliance on Mental Illness.

Mission

NAMI identifies its mission as to promote recovery by preserving and strengthening family relationships “affected by mental illness”. NAMI’s programmes and services include education, support groups, informational publications, and presentations. Although originally focused primarily on family members, in more recent years NAMI has moved toward trying to include people diagnosed with mental illness as well (although activists have criticised these efforts). In addition, NAMI has a strong focus on discriminatory attitudes and behaviours about mental illness (what they term stigma); another identified goal is “to increase public and professional understanding”, and “to improve the mental health system”.

Structure

The National Alliance on Mental Illness is a 501(c)(3) non-profit run by a board of directors who are elected by membership. NAMI National is the umbrella organisation; state and local affiliates operate semi-independently, in an attempt to more accurately represent those in the surrounding communities. Since 2015, NAMI has been using a four-year strategic plan which expires in 2019.

The national chief executive officer from 2014-2019 was Mary Giliberti, who resigned on 24 April 2019. She was immediately preceded by Michael Fitzpatrick. Gilberti, who has a law degree from Yale University and clerked for Judge Phyllis A. Kravitch. Before coming to NAMI, Giliberti worked as a senior attorney at Bazelon Centre for Mental Health Law for almost ten years and the Senate Health, Education, Labour, and Pensions Committee from 2008 to 2014. She worked for NAMI National during this time as the director of public policy and advocacy for federal and state issues. In 2017, she was “appointed by the Secretary of the U.S. Department of Health and Human Service (HHS) to serve as one of 14 non-federal members of HHS’ Interdepartmental Serious Mental Illness Coordinating Committee.”

National and state NAMI organisations function to provide Governance, Public Education, Political Advocacy, and management of NAMI’s Educational Programmes. At the local level, the local NAMI chapters also provide assistance in obtaining mental health resources, scheduling and administration of NAMI’s programmes, and hosting local meetings and events for NAMI members.

In February 2020, NAMI Sioux Falls has merged with the South Dakota Office. The move was a result of a decision by the national NAMI office.

Partnerships

In 2017, NAMI partnered with Alpha Kappa Alpha (since 2015), Instagram, tumblr, Women’s Health, Fox Sports, Stanley Centre for Psychiatric Research at Broad Institute, Jack and Jill of America, The Jed Foundation, and Lokai. Celebrity partnerships included Utkarsh Ambudkar, Maria Bamford, Andrea Barber, AJ Brooks, Sterling K. Brown, Corinne Foxx, Naomi Judd, Dawn McCoy, Stefania Owen, Alessandra Torresani, Wil Wheaton, DeWanda Wise, and Chris Wood.

Philosophy and Positions

NAMI generally endorses a medical model approach to mental illnesses, and previously was a major proponent of terming them “serious brain disorders” during the “decade of the brain”. NAMI endorses the term anosognosia, or “that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately”. While NAMI previously referred to mental illnesses as “serious brain disorders”, current advice on their “How we talk about NAMI” page recommends against this language.

Programmes

NAMI programmes are generally in the area of support and education for individuals and families, often for no cost. The programmes are set up through local NAMI Affiliate organisations, with different programmes varying in their targeted audience.

NAMI Family-to-Family

The NAMI Family-to-Family Education Programme is a free eight-week course targeted toward family and friends of individuals with mental illness, providing education from a medical model perspective of mental illness. Originally offered as a twelve-week programme, but updated to a shorter model in 2020, the courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states, and two provinces in Canada. The programme was developed by clinical psychologist Joyce Burland. Facilitators are required to teach material from the curriculum without alteration.

Purpose

The Family-to-Family programme provides general information about mental illness and how it is currently treated from a medical model perspective. The programmes cover mental illnesses including schizophrenia, depression, bipolar disorder, etc., as well as the indications and side effects of medications. Family-to-Family takes a biologically-based approach to explaining mental illness and its treatments.

According to the NAMI website, Family-to-Family programme states its goals as teaching coping and advocacy skills, providing mutual support, how to “handle a crisis”, “information on mental health conditions and how they affect the brain”, and locating resources in the community

Evidence Base

The NAMI Family-to-Family programme has initial research evidence; one randomised clinical trial showed gains in empowerment, increases in problem solving and reductions in participant anxiety scores following the class; these changes persisted at 6 month follow up. These studies confirm an earlier finding that Family-to-Family graduates describe a permanent transformation in the understanding and engagement with mental illness in themselves and their family. Because a randomized controlled trial is at risk of poor external validity by mechanism of self-selection, Dixon and colleges sought out to strengthen the evidence base by confirming the benefits attributed to Family-to-Family with a subset of individuals who declined participation during initial studies.

The NAMI Family-to-Family programme was found to increase self efficacy in family members involved in caring for a family member with schizophrenia while reducing subjective burden and need for information. In light of recent research, Family-to-Family was added to the SAMHSA National Registry of Evidence-Based Programmes and Practices (NREPP), although as of January 2018 this database and designation has been eliminated by SAMHSA.

NAMI Peer-to-Peer

The NAMI Peer-to-Peer is an eight-week educational programme aimed at adults diagnosed with a mental illness. The NAMI Peer-to-Peer programme describes the course as a holistic approach to recovery through lectures, discussions, interactive exercises, and teaching stress management techniques. The programme provides information about biological explanations of mental illness, symptoms, and personal experiences. The programme also includes information about interacting with healthcare providers as well as decision making and stress reducing skills. The Peer-to-Peer philosophy is advertised as being centred around certain values such as individuality, autonomy, and unconditional positive regard. The programme is also available in Spanish.

Preliminary studies have suggested Peer-to-Peer provided many of its purported benefits (e.g. self-empowerment, disorder management, confidence). Peer interventions in general have been studied more extensively, having been found to increase social adjustment.

NAMI In Our Own Voice

The NAMI In Our Own Voice (IOOV) programme started as a mental health consumer education program for people living with schizophrenia in 1996, and was further developed to IOOV with grant funding from Eli Lily & Co. in 2002. The programme was based on the idea that those successfully living with mental illness were experts in a sense, and sharing their stories would benefit those with similar struggles. The programme approached this by relaying the idea that recovery is possible, attempting to build confidence and self-esteem. Because of the initial success of the programme and positive reception, IOOV also took on the role of public advocacy.

NAMI In Our Own Voice involves two trained speakers presenting personal experiences related to mental illness, in front of an audience. Unlike the majority of NAMI’s programmes, IOOV consists of a single presentation educating groups of individuals with the acknowledgement many are likely unfamiliar with mental illness. The programme’s aims include raising awareness regarding NAMI and mental illness in general, addressing stigma, and empowering those affected by mental illness. Other than those directly affected by mental illness, In Our Own Voice often educates groups of individuals like law enforcement, politicians, and students.

In Our Own Voice has been shown to be superior at reducing self stigmatisation of families when compared to clinician led education. Research into the effectiveness of the NAMI In Our Own Voice programme has shown the programme also can be of benefit to Graduate level therapists and adolescents. A 2016 study evaluating IOOV in California found significant reductions in desire for social distancing after attending an IOOV presentation, although no validated measures were used in the evaluation.

NAMI Basics

The NAMI Basics Programme is a six-session course for parents or other primary caregivers of children and adolescents living with mental illness. NAMI Basics is conceptually similar to NAMI Family-to-Family in that it aims to educate families, but recognises providing care for a child living with mental illness presents unique challenges in parenting, and that mental illness in children typically manifest differently than in adults. Because of the development of the brain and nervous system throughout childhood and adolescence, information regarding mental illness biology and its presentation is fundamentally different from with adults. The NAMI Basics programme has a relatively short time course to accommodate parents’ difficulty in attending because of their caregiver status.

NAMI Connection

The NAMI Connection Recovery Support Group Programme is a weekly support group for adults living with mental illness. The programme is for adults 18+ diagnosed with mental illness and groups are usually weekly for 90 minutes. The support groups are led by trained facilitators who identify as having experienced mental illness themselves.

NAMI On Campus

NAMI On Campus is an initiative for university students to start NAMI On Campus organisations within their respective universities. NAMI On Campus was started to address the mental health issues of college-aged students. Adolescence and early adulthood are periods where the onset of mental illness is common, with 75% of mental illnesses beginning by age 24. When asked what barriers, if any, prevented them from gaining support and treatment, surveys found stigma to be the number one barrier.

Ending the Silence

This 50-minute or one hour programme is available for students, school staff, and family members. It involves two presenters: one who shares educational information and one who is a young adult living well in recovery who shares their personal story. This programme has been shown to improve the mental health knowledge of middle- and high school students.

In 2017, Former Second Lady of the United States Tipper Gore gave a $1 million donation to the Ending the Silence programme.

Funding

NAMI receives funding from both private and public sources, including corporations, federal agencies, foundations and individuals. NAMI maintains that it is committed to avoiding conflicts of interest and does not endorse nor support any specific service or treatment. Records of NAMI’s quarterly grants and contributions since 2009 are freely available on its website.

In 2017, NAMI had a 16% increase in overall revenue.

NAMIWalks

The 2017 annual report noted “$11.3 million raised across the country by 68,000 participants.”

Criticism

The funding of NAMI by multiple pharmaceutical companies was reported by the investigative magazine Mother Jones in 1999, including that an Eli Lilly & Company executive was then “on loan” to NAMI working out of NAMI headquarters.

During a 2009 investigation into the drug industry’s influence on the practice of medicine, US Senator Chuck Grassley (R-IA) sent letters to NAMI and about a dozen other influential disease and patient advocacy organisations asking about their ties to drug and device makers. The investigation confirmed pharmaceutical companies provided a majority of NAMI’s funding, a finding which led to NAMI releasing documents listing donations over $5,000.

Dr. Peter Breggin refers to NAMI as an “AstroTurf lobbying organisation” of the “psychopharmaceutical complex”.