Steering
Committee Notes
March 13, 2000
8:30 a.m. – 6:30 p.m.
Embassy Suites
Washington, D.C.
Tom announced that the new Chair of the Research
Subcommittee is Greg Teague.
Cost Subcommittee Workshop
Brian Yates, Chair and David Lambert, Co-Chair
Brian explained Track 1.5 is program activities.
It can be plugged into Track 2.
Volunteer resources also need to be tracked; this information is
contained in Track 1. There are more volunteers in COS than TMHS.
People may need help in counting in-kind help into cost data.
Sally asked how to count Drop-In center costs. Brian
said that the cost information study is based on units of cost x units of
service. Unit of cost is calculated over a long period of time – most
likely on an annual basis since budgets changes.
He explained how to report visits and performance of procedures.
Some sites gave examples of ways in which they
counted costs. Janine said
they have an unobtrusive way of counting the activities of each
participant. The staff
records the services of each individual on an attendance sheet.
They also count plates. The
Peer Center tracks and maintains a file on each person.
The State and County require it.
They think it would be a burden to have researchers checking on
staff. Other problems are
time, cost of staff and the loss of confidentiality.
Diane Cote has a 1.2 million-dollar budget.
She is concerned about what that does to their unit cost?
Would breaking down unit cost be better to get more accurate cost
in Track 2? She has 1300
volunteer hours per month and donations in-kind to 100 thousand a year.
She is uncertain how she accounts for these.
Brian says that time frames are necessary for good
study information. Three
months data collected equals a one-month turn around period. Brian indicated that the more frequent the reporting the more
improvement there would be in the data collection. Medicaid data takes longer.
Randy said that Medicaid is an inaccurate reflection of Health Care
cost. Brian clarified that
the Medicaid data is for utilization, equaling units of service, not cost
of care. Medicaid changes in
utilization would also be used to measure cost savings.
Medicare data can capture, at some sites, information
on whether the amount of Health Care Utilization, emergency room visits,
change and that can help validate and answer criticisms about the
outcomes. The reduction in
hospitalization, emergency room, and health care services.
Tom was concerned about how to address billing cycle
realities. A month three
expense may not show up until month four.
Less frequent data collection would produce fewer overlap periods.
Tom prefers six months data collection.
Jean asked what the plans were for running cost study
pilots. Brian thought this
would be very helpful. The
issue is what data, how often and how can you get it. He said we cannot
afford to wait a year to get this information.
Data Repository
Rita Adkins, Data Repository Manager
It is the responsibility of the team to provide
information that can be successfully analyzed.
A data entry program has been designed to capture everything that
was on the Common Protocol. Information
was obtained from the seven sites and formatted to allow analysis.
The data table was designed with entry constraints and re-entry
verification. Rita explained and demonstrated step-by-step how to use the
program.
The challenges of differing levels of technical
expertise can lead to confusion and errors (i.e. data entry, recording,
formatting, illogical errors). Data
verification errors are generally human recording errors.
Interviewers need to be better trained.
After the data arrives at the CC queries will be run
to make sure that records are complete and entries have been verified.
We will send records back to a site for corrections. The CC will do
some queries to monitor on site quality. Then
we will merge the seven files we get from the individual sites.
The CC will run some SQL to rename the variables to make it easier
for statistical analysis.
Rita said procedures are in place for maintaining
database integrity. MIMH
repairs and compacts database daily then backs it up on a disk.
Back-ups copies are kept off-site.
Each site is responsible for sending their files to the
Coordinating Center for merging.
The data collection schedule for this year was
distributed. The deadline is
one month after the end of the quarter. If data is not correct it will be
sent back to the site. Corrections
should be made and data returned within five days.
Site Updates
Maine
Janine was introduced as new chair of MCAP. She
reviewed the CAP procedures. CAP
looks at the quality of services by looking at feedback from those
receiving services.
Ruth showed a copy of their Consent to meet with
Research Team Member form Contact form (“Consent to Contact”), phone
contact log, Confidentiality Procedures, and flier (a part of their
recruitment process). IRB approvals are in place.
A person from Muskie is working on data entry and back-up plans.
Three interviewers have been trained.
David discussed the cost study. He said permission was received to use their Medicaid Program
for their data because they routinely collapse Medicaid data into
analytical files. Information
will be collected to associate costs in three ways: budget data to
allocate staff and volunteer resources, log and attendance that will be
voluntary and confidential, and basic Medicaid data.
The Coalition will be looking and interviewing drop-in center
activities staff. Ruth is shadowing a few clients to document the impact
of services on their lives. Challenges
faced include getting the project started, cultural competency (mostly
white clients), etc. Their recruits come from mental health system.
Racial immigrants have not reached MH system yet.
Zahira said enhancements to the Portland Coalition
include a book library, a citizen’s access network computer and a
computer online library. Hours
have been increased to include Saturdays.
Two meals a day are served and bus tickets are available and have
proven to be cost efficient.
Susan asked about the exclusion criteria where people
with guardians are excluded.
Betsy expressed concern about exclusion from these
groups. She asked Sally to
review Logistics agreement concerning this.
Sally responded by stating that to her knowledge people with
guardians have never been excluded. Louetta
said that a guardianship agency lawyer recommended that they get an
Informed Consent from guardian. In
Tennessee they have not excluded anyone based on guardianship.
Jean C. asked that Sally add this topic to the Logistics Committee
meeting agenda.
Florida
Diane Cote said the Peer Center tracks everything in
terms of their cost site data collection.
There are at least seven cost centers and at least ten activities
to track by funding sources. They
received IRB approval for collection of data for the cost study.
Consent forms included comprehensive consent for collecting data.
Their project manager, Nancy Irwin is responsible for collecting
cost data. Source of data at
Henderson is program expenditures (Track 1.5) and at the Peer Center,
total program budget (Track 1).
Nancy said they have two IRB’s since they added
California. The original IRB
did not address legal guardians and needed some amending. They are awaiting approval.
She reported that they hired outside contractors who
have completed the Interviewers Training. There is a two part
confidentially agreement. Both
participants (in the Informed Consent) and the outside contractors
(through a clause in their contract) are made aware of and agree to
maintain confidentially.
The criteria for recruitment are sent to the
traditional pool, and eligible names are selected randomly. People are contacted when they come in for their normal
visit. If consent is given, individuals from the control group are
interviewed immediately. Those
in the experimental group will have a date set to interview in the Peer
Center. Florida will be
recruiting over 300 people, California over 200. Sally talked about the
data entry and verification of the 500 people in the study.
Interviews will be stored in files in the Peer Center office.
Sally, as the consumer representative, has developed
a website that is specific to information for consumers.
The Consumer Advisory Board can use the COSP mailing list and use
FLICA 2000.
Money is used for enhancements, such as for drop-in
center greeters, housing to aid in rental assistance, deposit security,
utilities security deposits, and job coaches in the print shop. With COSP
dollars Florida will be able to get trainees for each department.
The staff is diverse with minorities with Hispanics,
Haitian, Jewish, individuals etc. They are also language diverse.
They have a print shop, a thrift shop and a computer lab business.
Part of the motivation to include California is its
similarity to Florida’s program. The
FLICA program will have their own communications network through
teleconferences and their website.
Jean Campbell asked: Does Florida have a
confidentiality oath signed by staff? Where are they at in the Interviewer
Training? What cluster scales are you doing? When do you plan to collect
your first baseline interview?
Confidentiality oath and training of interviewers is
complete. Still waiting for
IRB approval due on April l in Florida and April 15 in California.
Will send cluster MDSC,
a measurement of social support.
Brian asked about in-kind donation inclusion in cost
analysis. Volunteer donated
services at Henderson will be coming.
Greg says they will pursue degree of donated services and materials
with them. Randy suggested
all of the site-specific information could be posted to Freedrive for
collaborative understanding and knowledge exchange.
Sally asked about random selection in research
design. Answer was that it
gives a more representative group of people invited into the study.
We are telling Henderson which people we want invited into the
study. If we don’t tell
them, or if we don’t monitor the system they can make choices of who
enters the study. We want a
representative or subset of people in order to prevent bias.
Missouri
Sally Rogers talked about the withdrawal of the Iowa
site from the study. The Center wrote a proposal with the Empowerment
Center of St. Louis, MO. And two traditional providers; the proposal was
accepted by CMHS.”
Randy Breeze explained the Missouri Mental Health
structure. Service areas are
the Department of Mental Health, St. Louis Mental Health Board, BJC, and
Places for People. Helen
Minth talked about the St. Louis Empowerment Center.
The Board of Directors is 60% consumer run and provided 28,000
hours of service in 1999. Brochures
were distributed to the group describing the Empowerment Center’s
services.
Brian said there is a temporary snafu with BJC
(associated with Washington University) in getting IRB approval. He thinks
everything will eventually fall into place. We will use the computer-based
interview while waiting for the red tape to clear.
We need to have an Interviewer trained. We need our last IRB
approval to start recruitment – everything is under development.
We will use Tennessee data entry but we are still trying to figure
out how to transmit data to CC. In
terms of the cluster-research activities, we have just joined the cluster
and are still trying to figure out what the cluster is doing. They are looking to expand communications through web
presence.
Sally said that originally there had been talk of
Track l.5 for the COS but after consulting with Crystal, it may be more
like Track 2. Data extraction
forms will be used to examine the logbooks every other week.
Tracking the number of individuals attending self-help or using the
Friendship line can establish the cost of using the Center’s per hour or
visit. The Center keeps track
of in-kind donations and volunteer hours.
They will use Medicaid billing information at each TMHS.
Vicki W. asks how to distinguish between traditional
provider and consumer provider services with the drop-in center.
Sally said the drop-in center does not serve the same population as
the Empowerment Center and we will not be recruiting from the drop-in
center’s clientele. Matt
wondered how the mid and south St. Louis catchment areas will impact the
demographics. Randy said both
the City and County are coming from the same demographics, but not from
the same precise geographic definitions. Sally said that while they are
waiting for the BJC item to work out, they would be recruiting from Places
for People, which serve mostly the City.
Sally said they would be recruiting 240 clients.
Sally will be the contact person. The Empowerment Center and the local researcher are on the
listserve.
Jean C. said the Consumer Advisory Board could only
be consumers for this study. The Florida measures are being considered for
the cluster analysis scales.
Pennsylvania
PA site uses CMHPSR data confidentiality agreement.
They have IRB approval from Pennsylvania and City.
Data is backed up daily and stored off-site.
In terms of collaboration and local CAB, PA has six meetings a
year. The Consumer Advisory
Board has reviewed all aspects of cross-site and local research
activities. PA is using Track
1for the cost study. They
have their own tracking database and progress notes locally.
CMHPSR has long-term access and experience with Medicaid and OMH
records. Separate consents are used for separate sets of information.
Two interviewers have been trained at MIMH; four others have been
trained on the Common Protocol.
Research procedures include recruitment from Friends
Connection, initial screen, initial orientation, Informed Consent and a
baseline interview. Randomized
participation is decided using computer generated numbers.
Friends Connection recruitment efforts were limited in anticipation
of project, and the result is new referrals are trickling in due to
delays.
Pennsylvania is looking at new grants and further
collaborations between MHASP and PA.
Relationship with TMHS has been enhanced. Brochures have been developed for Friends Connection
describing services. PA has
been and will continue to be involved in NASMHPD presentations.
FC adds to personal growth. We
have completed one interview. PA
is collecting data for Track 1.
Connecticut
Connecticut is on target to recruit their 160
participants and to complete their data collection by March 2002. They
have a working partnership with the COSP, TMHS and the MHS Research
Department in Connecticut. Goals
are to obtain solid scientific data, minimize the impact during research
on both COSP and traditional programs, meet the multi-site goals, involve
consumers in both COSP and traditional services, contribute to the
multi-site effort, and effectively adapt to multi-site delays.
Connecticut is on Track 1.
They have IRB approval and applied for Confidentially Certificate.
Data will be based on expenditures and cost per hour per
participant. They will use
individual, volunteer and in-kind resources.
Data is submitted quarterly. Their
back-up plan is zipped daily and the data is encrypted.
They obtained permission to have an active database.
They have hired all consumer interviewers.
Their Informed Consent Protocol includes determining eligibility,
making sure they have good retention and by verifying that participants
will stay in the study for a year.
They have completed 15 baseline interviews, had 41 referrals, 2
refusals during phone contact, with all others scheduled.
The CT interviewers are contracted because they are based on a
semester program. Data is
entered by one and verified by another.
Cultural competency is based on training at MIMH. Consumer Advisory
Panel meets BI-monthly.
All staff has Internet access. Enhancements include
updated computer equipment, increased wages for consumers, and obtaining
office equipment such as a copier.
Sally asked about blocking on gender with envelopes.
They have 2 streams and 2 boxes of envelopes – one for males and
one for females.
Jean wanted to know when they were taping an
interview and was told next week.
Tom asked what to do about hiring consumers with
higher wages when the money runs out.
What are the plans after the project is over?
Yvette responded that she is hoping to put in for more grants or
for spill over from COSP extensions.
Betsy said to look at the St. Louis model, which is
somewhat reliant on community support.
She urged people to start applying for community action grants now
and to incorporate COSP procedures into the system now.
Joe R. says that when he has applied in the past,
there was not enough research to support COS.
Peer membership groups are the most in need for further research.
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