Patients Crossing State Lines

Central Registries

9/4/08

Blaine Shaffer (NE) asked: Do any of you have experience in setting up an OTP central registry and can you describe what information was collected, how it was stored, who can have access, and regulations about confidentiality?

Information from September 19, 2007 SMA Quarterly Conference Call:

Patients Crossing State Lines

Donald Hall (MD) raised the issue of residents of DC, WV, and DE coming into MD programs and his concern for dual enrollments. Deb Powers noted that WI, IL, and MN use central registries, where the SMA clears patients who go across borders. WI has added language for HIPAA that addresses whether or not they are dually enrolled, checking by name, date of birth, and social security number, not by address. Nick noted that an immediate solution might be to obtain each patient’s consent to contact all the OTPs in a hundred mile radius, with the patient’s identifying information, to determine if the patient could be enrolled in another OTP.

Jennifer Dunaway (NV):

In Nevada we do not have a central registry at this time.

Brenda Lands (LA):

Louisiana does-will help any state when time permits-dealing with GUSTAV now

Virginia Ervin (SC):

Neither do we here in SC.

Wayde Glover (VA):

We don't have one, but are looking at creating one and I'd be interested in the reply.

Darran Duchene (FL):

We have a Central Registry here in Florida that has been operational for nearly two years that was developed by Lighthouse Software Systems. It was paid for jointly by the state and the OTPs (non-profit and profit). To ensure confidentiality, only Florida OTPs can access the system (which couldbe expanded via agreements with OTPs in bordering states).The systemgenerates an identification number using pieces of information from the patient (parts of date of birth, social sec number, etc.) that are consistently collected upon admission to an OTP. The system also contains patient admission/discharge/status information and a photo of the patient for identification purposes. Prior to admitting any patient to an OTP, providers check the registry to determine whether the patient is active at another OTP in Florida. If the patient shows up as active in the system the identified OTP is contacted to discuss the patient's case history. The patient cannot be dosed at the new OTP until his/her history is verified and the prior case is closed out - to prevent duplicate dosing.

We are getting ready to enhance the system for disaster preparation to allow us to capture patient dosing information in the event of an emergency, patients assigned OTP, and patient census. We are also building in some administrative reporting features to generate reports on patient census and a breakdown of patients by gender, age, dosage and duration in treatment. I believe these enhancements will be very beneficial to us in the event we experience a moderate to large scale disaster (hopefully not soon with all the hurricanes about) and patients need to be guest dosed at an alternate site due to evacuation.

Joan Robbins (CA):

California is developing an FSR to establish a system similar to what Florida has.

Jerry Jones (OH):

In October 2007 the National Conference of State Legislatures sponsored a meeting in Columbus on Prescription Drug Monitoring Programs. Information was presented on issues around privacy, the physician’s role and use of the program, federal funding and technical assistance, legislative experience, the law enforcement perspective, technology issues and drug abuse.

A summary of presentations can be found online at

Joan Smith (DC):

The District of Columbia does not have a central registry. However, of the nine OTPs in the District, District of Columbia agencies operate three of these OTPs and share enrollment information.

Additionally, 42 CFR, Part 2, sections 2.33 & 2.34 also reference “Central Registry” requirements under confidentiality.

Louise Polansky (IN):

A State law enacted in 2004, PL 288-2004, Section 191, required that the Indiana Family and Social Services Division of Mental Health and Addiction (DMHA) establish and maintain a "central opioid treatment registry," and beginning in 2004, DMHA began the process of designing an electronic registry, the main purpose of which was to prevent "dual enrollment" of opioid treatment program (OTP) patients in more than one Indiana OTP.

The registry, named the Indiana Central Opioid Patient Electronic Registry, or ICOPE, was tested in late 2006, and implementation (onsite use by Indiana's then 13 OTPs) began in late 2007. During the past 12-16 months, the registry, which uses deidentified patient information,has been used by all the OTPs to enroll patients as they are admitted. Through the ICOPE, data is able to be extracted for legislatively required annual (to be biennial beginning this year) reports containing among other information,the following:

• Number of patients treated by Indiana OTPs
• Length of time patients aretreated withmethadone in Indiana OTPs
• "Recovery rate" of patients on methadone
• Number of patients rehabilitated and no longer on methadone
• Number of patients on waiting lists to enter OTPs

During the 2008 session of the Indiana General Assembly, additional data is being required, and the ICOPE is being modified to be able to collect this information as well. It may be implied from this that operational definitions have had to be devised to obtain the information required for the reports, and this has been done. What we can say now is that the ICOPE is a work in progress, is collecting a considerable amount of de-identified patient information,and is beginning to be a useful tool to provide the legislators with information they want and policy makers, including the State Methadone Authority's staff,with information for policy decisions. Challenges remain, and although I don't think anyone here in Indiana would want to put the ICOPE up as an ideal central registry, it is definitely providing many good lessons. Louise Polansky, Assistant Deputy Director for Opioid Addiction Treatment Services, Indiana

Dave Felt (UT):

Utah is currently establishing one. We are trying to keep it very simple, and will collect a minimum of data. The exact details are still being worked out but here is what we discussed at our last Quarterly OTP

meeting:

Data Base for Methadone Clients

1. Idea is to keep it very simple. Minimum information entered, minimum information retrieved.

2. Purpose is to track admissions and discharges, and ensure there is no double enrollment.

3. Security:

a. Each clinic will have one password/access code.

b. State will have two. One for Data manager, one for SMA.

c. Entrance to data base will be secure.

d. Clinics will only have access to their client lists.

4. Procedure:

a. Upon new admission clinic will enter:

First NameLast

nameBirthdate

Gender SSN (some or

all)Admission Date

(possibly address, but this is considered to be marginally useful)

b. The system will do a search before it accepts/saves the data.

c. If a duplicate record that is still open, or one that has been discharged within the past 30 days is found, the matching record, clinic and admission/discharge date will pop up. If it is a match, the new clinic will be told not to admit the client until coordination with the other clinic is accomplished.

A match will be considered any record that has a ______% match of data entry. (say 80% match) (% still to be determined)

d. No client will be allowed to be open in two clinics

simultaneously.

e. Clinics will be responsible for keeping discharges up to date.

f. Some report data (Number of clients per clinic, etc) will be pulled out at State level, but I will not have access to Clinic client lists, only the data manager will.

5. Issues:

a. Importance of entering discharge data.

b. Initial Data loading

c. Need to use “official data” for entries. (Driver’s License or Utah ID number)

We are still hammering out details. Hope this helps.

Rosemary Shannon (NH):

Although NH Administrative Rules have a central registry requirement, we have not been able to do this function because we do not (yet) have a real time, or nearly real time, data system.

We have 3 companies who operate the 8 programs in NH. The programs have developed a release of information form for, not only the NH OTPs, but also include several NH pain management programs. Two of these providers also operate in Massachusetts, and this release includes the 'across the border facilities' as well.

Rick Moldenhauer, MN

MN has had a Central Registry in place since 1.1.05. I have attached the portion from our tx rules and a copy of the form. If you like,I can talk you through the actual process of info storage and retrieval?
6530.6500, Subp 6
Subp. 6.
Central registry.

Programs serving intravenous drug abusers must comply with requirements to submit information and necessary consents to the state central registry for each client admitted, as specified by the commissioner. The client's failure to provide the information will prohibit involvement in an opiate treatment program. The information submitted must include the client's:

A.full name and all aliases;
B.date of admission;
C.date of birth;
D.Social Security number or INS number, if any;
E.enrollment status in other current or last known opiate treatment programs;
F.government-issued photo-identification card number; and
G.driver's license number, if any.

The information in items A to G must be submitted in a format prescribed by the commissioner, with the original kept in the client's chart, whenever a client is accepted for treatment, the client's type or dosage of a drug is changed, or the client's treatment is interrupted, resumed, or terminated.

Michelle Flowers, KY:

In Kentucky we are in the process of setting up the next phase of our data collection program with the OTPs. Our project is handled by the University of Kentucky Center on Drug and Alcohol Research. Their program meets all the requirements for protected information. This portion is what we hope to use in the future as our central registry. The information that will be entered is: client name and social (which is immediately encrypted), whether the client is on Methadone or Suboxone, mg level, last drug screen result, other diagnoses, and phase level (which reflects how many take homes they currently receive). This information can be updated at any time and takes a matter of seconds per client and is separated by clinic. The information is entered on a computer program and uploaded to CDAR. Only UK CDAR staff can access the full database and the SMA and SMA designee can do so by request to CDAR. This will hopefully allow for a client to show up at any of our clinics in an emergency or disaster situation and be able to receive treatment.

Deb Powers, WI

I've attached a copy of Wisconsin's central registry form to see if it would help. I first set mine up in dBase III (yes, that's how long I've had the registry) but converted it to Access. It is pretty simple once you establish what you want to collect, etc.

CONSENT OF DISCLOSURE INFORMATION MULTIPLE REGISTRATION FORM

I, hereby authorize ______Clinic to disclose the following information as permitted by the State Law (HFS 75.15(5)(i)) to the State Methadone Authority to include:

• A photograph

• Name and aliases ______

• Date of Birth ______

• Social Security Number ______

• Residence [Zip Code] ______

• Physical features such as hair and eye color

• Distinguishing traits such as scars or birthmarks

• List physical features/distinguishing characteristics:

I understand that my treatment is voluntary; however, I am required to participate in a central registry and the purpose of this disclosure is for the prevention of multiple narcotic maintenance or outpatient detoxification program enrollment. I understand that this information will be used in multiple registration reviews and that information may be reported to other narcotic treatment services for coordinated care.

This consent shall remain in effect as long as I am a patient on this program (Sec. 2.34 (H) Federal Regulations), and may be subject to written revocation at any time except to the extent that the program has already acted in reliance on it. Per 45 CFR Parts 160 and 164, the information that I authorize to be released may be re-disclosed by the recipient of the records only if allowed by law. If information is re-disclosed, the recipient of the re-disclosed information may be controlled by different laws.

SIGNED Date ______

(Patient's Full Name)

Stacy Mullins, AR:

Arkansas does not maintain a Central Registry. We require our OTP’s to check the OTP’s within a 200 mile radius of the program.

Daria Leslea, CO:

Colorado does have a Central Registry that tracks any patient that enters opioid treatment in the state. I didn't help set it up but have helped make improvements to the current system.
In our central registry we have the patient's name and any aliases they may use; their social security number; date of birth; date they were admitted to the OTP; name of OTP they were admitted to, date of discharge from an OTP, whether they are receiving methadone or suboxone.
On the central registry it also has information about whether a patient is locked into or locked out of opioid treatment.
Any time a patient wants to enroll in opioid treatment there is paperwork that must be completed by the clinic and faxed to one of the admins in our Division who will enter the information into the database. This paperwork includes patient name, DOB, SS#, admission or discharge date, etc.
The clinic must also call the Central Registry prior to admitting the patient to make sure they are not enrolled in another OTP.
Confidentiality is protected by 42 CFR.
The database is pretty simplistic but has served us well.
Jeff Gronstal, IA:

Hello, I saw your request for info. We have a registry in Iowa. If you send me your mailing address I can send you a copy of the relevant code; data field description and procedures.
Jeff Gronstal
Licensure Surveyor
Iowa Department of Public Health
Bureau of Administration and Regulation
321 East 12th Street
Des Moines, Iowa 50319
(515) 242-6162

Ray Caesar, OK:

Oklahoma has an electronic central registry that contains patient identifying information, dosing, etc. We also use this as an emergency data base. In the event of an emergency, someone from the affected clinic must notify the Department via a 24 hour phone line. The emergency data base is then activated and any patient presenting at another clinic can give identifying information and dose, phase, special considerations/conditions can be called up.

All patients sign a release when they enter treatment. The regulations for this central registry/emergency data base are covered in Oklahoma Administrative Code.

Jessie Wright, MS:

Please share with me in thanking Brenda Lands, from the State of Louisiana, for her Central Registry help during Hurricane Gustav.

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