Research
Why is Scientific Research Important?
Right now, you may be thinking, “I prefer to give to an individual torture survivor to make his or her life better. This is something I can imagine and see.” Funding direct services is critical, but we want you to know that research is also vitally important.
Right now, we don’t know which psychiatric and psychological treatments are the most effective.
We need to do research to ensure that treatment provided to torture survivors is effective.
We need to do research to ensure that funds donated or allocated to provide treatment to torture survivors is well spent. Right now, we don’t know the expanse of torture as a public health problem.
In order to advocate and or plan effective public health solutions for torture survivors, we need to do research. Right now, we don’t know how many torture survivors live in the U.S. or exactly how many of these need help and / or treatment.
Some are likely doing OK, but based on our own experience with survivors currently coming for treatment in NCTTP centers, we know that many torture survivors now living in the U.S:
Have significant physical health problems, such as undiagnosed and untreated hypertension and diabetes.
Are overwhelmed by persistent nightmares or other debilitating symptoms of posttraumatic stress disorder and depression.
Lack access to healthcare.
Lack access to legal services.
Lack access to social services.
Lack access to educational services.
The NCTTP has shown great potential to be a research leader on the efficacy of treatment for torture survivors, but, currently, the NCTTP currently has very little infrastructure, receives no regular funding, operates on minimal dues.
“We carry the hope of survival for torture survivors and can rejoice with them as they find their strengths. But we are just a way station on the road to recovery as they reconnect with themselves and get on with their lives, however long that may take… They can and do recover, but they can never forget.”
Linda Piwowarczyk, M.D, NCTTP President & Director Boston Center for Refugee Health and Human Rights
WHAT ARE WE DOING NOW in Research?
NCTTP data shows survivors of torture from over 125 countries have recently or are currently being treated in NCTTP treatment centers. Most of these Survivors have very serious psychiatric diagnoses and chronic physical health issues. In health literature, there is growing evidence of a connection between torture and cardiovascular disease, diabetes, and possibly, dementia.
Since 2008, the NCTTP Data Project has collected demographic, diagnoses, type of torture, and pilot functional outcome data on over 10,000 survivors of torture receiving treatment in NCTTP Centers across the United States. Over 8,000 of these survivors have come as new clients since 2008. The NCTTP’s capacity to collect data on such large numbers of torture survivors critically increases reliability and the potential impact of these data.
A manuscript summarizing these data has been accepted for publication by the Torture Journal. These data will be able to be shared on this website following publication. Considerations for the NCTTP’s future research plans include outcome studies on quality of life, physical health problems, psychological symptoms and diagnoses.
To date, the NCTTP Data Project has operated completely as a volunteer project with no dedicated funding for any technical or administrative assistance. The project likely cannot be sustained without funding.
The guiding principles of the NCTTP Data Project are:
The data collected as a part of the NCTTP Data Collection belongs to the NCTTP Centers participating in this data collection process.
The data collection process will be a “Cooperative Process”.
Inclusivity of all centers in these research projects is highly valued and will be encouraged and supported for centers which are interested in being involved.
Institutional Review Board oversight of the collection of these data is provided by the IRB of the Oregon Health & Science University (OHSU). Data is transferred securely from NCTTP centers to a secure data depository at OHSU.
Individual PHI and identity of specific centers will be protected in any data disclosed.
It is important that scientific descriptions pertaining to the demographics, outputs and outcomes of the treatment of torture victims in the United States be available to the public.