Collecting and Using Data:  How Consumer Health Assistance Programs Report on Their Work

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Consumer Health Assistance Programs (CHAPs) use databases to manage the information that they collect as well as to facilitate the preparation of annual or periodic reports. The reports convey information to funders and stakeholders about services provided by the program and problems experienced by health care consumers. Over the past few years, the Health Assistance Partnership and Families USA have prepared several resources pertaining to the development and activities of consumer health assistance and ombudsman programs across the nation. This new resource helps consumer health assistance programs develop data collection and reporting processes. It can also be used by CHAPs seeking to improve their current system of collecting data.  

Selection of Databases by Consumer Health Assistance Programs (July 2005)  

Prepared by Dawn Biss, HAP Intern 

Eight private insurance and Medicaid consumer assistance programs were asked about the databases they use. The selected programs represent the variety of government-based and non-profit programs throughout the country that serve Medicaid and/or private insurance consumers and that use data at least in part to identify trends in health care problems faced by consumers. The eight programs also represent geographic and client (e.g. rural v. urban) diversity. The information collected includes descriptions of the process used by each program to choose their database, benefits and drawbacks of their system, the database’s ability to facilitate preparation of reports, and the degree of customizability of the database for the particular program.

The programs from which information was collected are the following:

• Mental Health Ombudsman's Office , Montana: A government-based program that serves residents with mental health needs.
  
  

•  STARLink,Texas: A nonprofit program that, under a contract with the Medicaid agency, serves Texas residents in or eligible for Medicaid managed care.
  
  

• HUSKY Infoline, Connecticut: A nonprofit program that, under a contract with the Medicaid agency, serves residents enrolled in or applying for SCHIP, and their providers.
  
  

• Health Consumer Alliance, California: A nonprofit partnership of community-based legal services organizations which is funded by a private foundation. The Health Consumer Alliance serves low-income residents with health care problems in El Dorado, Fresno, Kern, Los Angeles, Orange, Placer, Sacramento, San Diego, San Francisco, San Mateo, and Yolo counties.
  
  

• Health Rights Hotline, California: A non-profit program funded by private foundations that serves residents of El Dorado, Placer, Sacramento, and Yolo counties. Health Rights Hotline is a county-based program that is a part of the Health Consumer Alliance but that established a database on its own which predates the Health Consumer Alliance.
  
  

• Governor’s Office for Consumer Health Assistance, Nevada: A government-based program that serves all residents with health-related issues including but not limited to benefits, denials, insured, uninsured, worker's compensation, appeals, and hospital billing. This program is also involved in advocacy and educational efforts pertaining to their services.
  
  

• Health Education and Advocacy Unit, Maryland: A government-based program in the Office of the Attorney General that serves any consumer who receives health care from a Maryland health care provider or who is insured by a Maryland-based insurance company.
  
  

• Managed Care Patient Assistance Program, North Carolina: A government-based program in the Department of Justice that serves consumers who are members of managed health benefit plans.

The table below provides a summary of the information gathered from each program that was surveyed. For more detailed information, click on the question listed in the left column.  

* Information is not available either because of proprietary agreements or unavailability of the information when this survey was conducted.

** Program does not regularly share their database or shell of the data system with other programs; however, this program has done so in specific circumstances. For additional detail, click here.

Highlights

• Most programs use Access or Access-based data systems as the versatility enables programs to satisfy a variety of requisite criteria identified by diverse programs.
• Some programs developed their databases for minimal cost as a result of established relationships with contractors or usability of the data system.
• Most enable ongoing, periodic customization in order to meet unique and changing needs of consumer health assistance programs.
• Programs look for data systems that facilitate their analysis of the data and empower them to prepare their own reports.

Click here to view additional publications and resources about Consumer Health Assistance Programs which have been prepared by HAP and other programs.

The following is a summary of the responses provided by each consumer health assistance program that was surveyed.

1. What type of database is used by the program?

 
Of the eight programs that were surveyed, six use Access or Access-based programs, one uses a Unix-based program, and one uses a web-based Java-script program.

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2. Was it developed internally? If not, who is the contractor?

 
Most of the programs surveyed contracted with outside consultants to develop their database. For the most part, programs made efforts to ensure that program staff would be able to perform most maintenance of the database.

Of the programs surveyed, the Governor's Office for Consumer Health Assistance in Nevada is the only one that completely developed the program internally.

The Montana Mental Health Ombudsman's Office hired a consultant who has extensive experience with state government Information Technology (IT) work to build their database. While it was being designed, program staff were taught as much as possible about it so they would be able to perform most of the maintenance and all of the day-to-day tasks involving the database.

Under its state contract, Texas STARLink was required to sub-contract out any IT work. Because of Maximus' experience with working with other state government programs, STARLink was encouraged to hire Maximus as consultant to develop their new data system.

An independent consultant for Maryland's Health Education and Advocacy Unit tailored the database to the specifications of the program. They were not able to provide the name of their consultant.

The Health Rights Hotline in California purchased a program, CLIENTS for Windows, and then hired a programming contractor to modify the original version so it would be able to meet the needs of its program.

Three programs (Connecticut's HUSKY Infoline, the Health Consumer Alliance in California, and the Managed Care Patient Assistance Program in North Carolina) each hired a contractor to work together either with a data expert on program staff or their head agency's IT department in order to design their program. United Way of Connecticut developed HUSKY Infoline's database jointly with a programmer from Maximus. The Managed Care Patient Assistance Program had a similar arrangement with Analysts International. Health Consumer Alliance hired an independent contractor to build the database itself, and also hired a part-time staff person to maintain the database.

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3. What was the approximate cost to develop the database?

 
Database development costs varied tremendously among the programs that were able to share this information.

Design costs for three of the programs (STARLink, HUSKY Infoline, and the Governor's Office for Consumer Health Assistance in Nevada) consisted solely of payment for staff time because a separate computer program did not have to be purchased. The representative from STARLink estimated this cost at about $1000 for its program. The other two programs did not provide estimates.

The Montana Mental Health Ombudsman’s Office paid approximately $7,000 - $10,000 for the design of their database. The Health Rights Hotline paid $18,000 for the program, CLIENTS for Windows, and then $16,000 for initial modifications to the program.

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4. What are the average annual costs to maintain the database?

 
Maintenance costs for the Montana Mental Health Ombudsman's Office are estimated to be less than $500 a year. Most of the maintenance can be done by program staff, and annual maintenance by the contractor generally consists of making changes to the types of reports that can be run.

Maintenance costs for STARLink, which are performed monthly, average about $500 to $600 a year.

HUSKY Infoline relies on United Way of Connecticut's IT department to perform most database maintenance. As a result, the annual maintenance costs are minimal. Although the representative was unable to provide an estimate, she did indicate that the database has been upgraded only once in the four years since it was developed. This upgrade was for the purpose of performance enhancement.

The Health Rights Hotline estimates its annual maintenance costs to be about $4,500.

Nevada's Governor's Office for Consumer Health Assistance program performs maintenance internally, and therefore the program absorbs the cost. In the event that they do need to obtain help from a consultant, which the program anticipates only if the system crashes, costs are estimated to be about $70 per hour.

Maintenance for the Managed Care Patient Assistance Program is performed by the North Carolina Department of Justice's IT department, which absorbs any costs. Because the IT department absorbs these costs, the program does not have an estimate of the value of this savings.

The representative for Health Education and Advocacy Unit, who could not divulge the actual costs, indicated that they have annual costs for maintenance, and then extra costs for any revisions that need to be done by the contractor.

The Health Consumer Alliance was unable to provide this information at the time of the survey.

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5. Who enters the data into the database, and when?

 
Six of the eight programs (the Montana Mental Health Ombudsman's Office, STARLink, HUSKY Infoline, Health Rights Hotline, the Governor's Office for Consumer Health Assistance, and the Managed Care Patient Assistance Program) conduct all of their assistance for clients by phone.  The phone counselors enter the data into their database as they are speaking to the client on the phone. One program (Health Consumer Alliance) collects data through nine offices throughout the state. The employees in this program enter the information into the system if they are conducting the counseling by phone. Many counselors in local offices around the state do a considerable amount of counseling in person during which the counselor takes notes on a locally prepared intake form and then enters the information into the database later. The Health Consumer Alliance is very flexible with this process so as to accommodate the needs of local offices, some of which are in rural areas.

Maryland’s Health Education and Advocacy Unit uses a combination of techniques to collect the data to enter into its database. Consumers can download and print an intake form from the program’s website, complete it, and mail it to the Health Education and Advocacy Unit; consumers who call the program’s hotline may be mailed a form to complete and to return to the program. The front-line phone staff may also complete the intake form while speaking to the consumer.  Determination of whether the form is completed by phone staff or mailed to the consumer for completion is based on the type of issue. The information is transferred from the intake forms to the database by secretaries.

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6. Can you run your own queries and reports, or must they be run by the contractor?

 
All of the programs surveyed are able to run queries and to pull reports on their own. However, several programs have limited different employees' access to the data and the types of queries they can pull. The Montana Mental Health Ombudsman's Office runs queries and reports on an annual basis for publishing, as well as periodically throughout the year in order to provide updates and to prepare for meetings.

A program was set up by Maximus to enable STARLink's Program Director to run regular reports, and there is flexibility so that additional reports can be run on an as-needed basis.

The Health Education and Advocacy Unit has limited each staff person's access to data for different queries based on the security clearance access level.

Certain standardized queries can be run using the Managed Care Patient Assistance Program's database. When additional customized queries are needed, staff must first download the data into Excel and then perform the query.

While the Health Rights Hotline’s program staff can run simple queries, they do depend on their consultant when more complex queries and data analyses are needed.

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7. Who has access to data in order to prepare reports (volunteers, staff, etc)?

 
Among the programs surveyed, the preparation of annual and periodic reports is most often a collaboration of several program staff members.

In several of the programs, different staff members can access different levels of data and prepare certain types of reports. For example, HUSKY Care Coordinators can prepare certain reports based on data from the clients with whom they have spoken and their job performance statistics. However, only while three higher-level staff access program data and prepare comprehensive reports such as the semi-annual program reports prepared for the Department of Social Services, and quality analysis, and validation reports.

In the Health Consumer Alliance, two levels of reports can be pulled: local queries are run by local supervisors using their local data, and an employee in the main office runs queries and reports based on state-wide data. The Managed Care Patient Assistance Program in North Carolina is another example of a program that designates to certain staff the access to prepare different types of reports. Some staff can run the standard reports, and some have access to run reports from the data that is first downloaded to Excel. In Maryland’s Health Education and Advocacy Unit, secretaries prepare certain periodic reports, while the annual report is prepared mainly by the Executive Director.

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8. Can the database be customized to meet the program’s needs, including adding fields to allow for tracking of new issues or topics?

 
The databases used by each program surveyed are able to be customized as needed. These changes most often include adding fields, codes, and drop-down options in order to capture new data. The Montana Mental Health Ombudsman's Office, the Health Education and Advocacy Unit, HUSKY Infoline, and the Governor's Office for Consumer Health Assistance are able to do all changes internally. While most of these programs do these changes one to two times a year, the Health Education and Advocacy Unit does so less than once a year. Although most changes to the Health Rights Hotline data system can be done by program staff, they do turn to their consultant for more complex changes. STARLink relies on its consultant, Maximus, to implement any changes as part of itsmonthly maintenance work, and the IT department of the North Carolina Department of Justice performs all changes for the Managed Care Patient Assistance Program.

Updates and changes are incorporated into an annual release of a new version of the Health Consumer Alliance’s database. More frequent updates are done if necessary, but generally only to address usability issues.

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9. Is the database itself (as opposed to reports from it) shared with any other programs, departments, or agencies? If so, how do they use the data? Can the database and data be transferred electronically?

 
Although none of the programs surveyed regularly share their databases with other programs, there have been situations in which this has been done. The Montana Mental Health Ombudsman’s Office provided a shell of its program, without any data, to a companion program within the state. HUSKY Infoline also has provided a shell of the database to other agencies funded by one of their funding sources. These shells were then further customized by the other programs in order to best meet their needs. The Health Consumer Alliance provides its database to their local programs, which then install the database on their local servers. The system is set up in such a way that the Health Consumer Alliance’s main office is able to collect data from local programs via remote access. In Maryland’s Health Education and Advocacy Unit, while the database itself is not shared, sections of it have been segmented and made available for the use of other units within the Consumer Protection Division; however, data are not seen by or shared among different units.

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10. What were your primary reasons for selecting this data system?

 
Each of the programs listed very specific criteria to be met by its selected data system. Some programs had more flexibility than others, both in deciding which type of system to use and also in selecting or deciding to select a consultant.

The programs that use an Access-based database (the Montana Mental Health Ombudsman's Office, HUSKY Infoline, the Health Consumer Alliance, the Governor's Office for Consumer Health Assistance, and the Health Education and Advocacy Unit) generally selected it for its ease of use, versatility, ability to have program staff perform maintenance, and empowerment of the program to track new consumer issues or emerging health care trends. The Montana Mental Health Ombudsman's Office mentioned additionally that they had been using Excel to gather data prior to switching to Access and considered the importance of being able to import into the new system the data already collected. The Health Consumer Alliance was also specifically looking for a relational database which would enable them to evaluate data from different issues.

STARLink is using a Unix-based data system because of convenience as it was essentially carved out of Maximus' larger established data system. Their considerations for doing so were based mainly on cost and availability.

The Health Rights Hotline selected its Access-based program, CLIENTS for Windows, based on cost, ease of modification, the ability to track clients as open cases, and usefulness of the program's notes function.

The Managed Care Patient Assistance Program did not have the opportunity to be very selective in the decision to use their current web-based system. The only criterion their data system had to meet was the ability of the Department of Justice’s IT department to perform all maintenance. Because this was the IT department’s requirement, this department led the process to evaluate possible databases and to make the final selection.

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11. What are the top benefits?

 
Each of the programs that responded to this survey listed a few aspects of its database that it views as being primary benefits.

The Montana Mental Health Ombudsman's Office explained that the consultant that built its database taught the staff how to use Access and to maintain the database. As a result, so they do not need to rely on the consultant to perform regular maintenance work. Also cited as a benefit is the ability of the program to view collected data in various combinations and forms, as this enables them to perform comparative analyses.

STARLink listed three main benefits of using its database: flexibility in adding and changing fields; flexibility to pull any combination of data that is needed and being able to rely on Maximus for all database maintenance.

HUSKY Infoline noted several, equally important, benefits associated with its database. It allows for a centralized record of information, enables a paperless environment, decreases duplication of work, and empowers the program to run its own reports so that the program gets more immediate access to results. Also, the database has both a live and a testing mode which makes it possible to train new users or test new fields without the risk of disrupting phone counselors' use of the system or causing errors within the system.

The Health Rights Hotline referred back to the reasons it selected CLIENTS for Windows, citing them again as primary benefits. Additional benefits include the referral database, which is used by phone counselors to refer clients appropriately, and the use of templates to facilitate mailing letters to clients.

The Health Consumer Alliance described the benefits of its database as enabling identification of trends in health access problems, helping the programs show examples of their impact and effectiveness, and identifying egregious client cases for its media and advocacy work.

Nevada's Governor's Office for Consumer Health Assistance restated the criteria that it used to select the database (ease of retrieving information and ease of use) as the top data system benefits.

Maryland's Health Education and Advocacy Unit listed a variety of benefits, including the extra functions available through the data system, such as a calendar and lists of contact information. They have noticed an increase in the program's efficiency since implementing the use of this data system and also are now able to perform comparative analyses of the data.

The Managed Care Patient Assistance Program in North Carolina cited the ability to back up the system though the IT department as the primary benefit of their current system.

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12. What do you wish you could do with this database or data that it currently is not set up to do?

 
Three programs (HUSKY, Health Consumer Alliance, and Health Rights Hotline) could not name any disadvantages with their data system. The representative from Health Rights Hotline indicated that may be because she has never worked with another database and therefore has nothing to which to compare it.

Several of the programs surveyed cited different aspects or issues that represent or are seen as drawbacks for the program.

The Mental Health Ombudsman's Office in Montana explained that certain parts of their database are becoming increasingly cumbersome as the amount of data is contains grows. As an example, the function that allows for searching for a client by name is not very efficient, causing phone counselors to undertake a lengthy search to access records for repeat callers. However, there is hope that with adequate funds, the program will be able to have the consultant make improvements and update the data system.

STARLink's database is essentially a carved out section of Maximus's larger data system. As a result, the program is concerned that it may not be able to provide much input if any changes are made to the overall system.

The Governor's Office for Consumer Health Assistance in Nevada noted a desire to track trends more effectively than it can do presently with its database. For example, they would like to be able to combine data for two issues to track trends, such as specific claims issues and the hospitals at which those complaints have occurred, in order to conduct comparative analyses.

The Health Education and Advocacy Unit in Maryland indicated that staff does not currently have the ability to allow for online filing of complaints by consumers. However, they do have a complaint form available on their website, which consumers can download, print, fill out, and mail to the program. The program is already taking steps to improve this shortcoming and is in the process of updating their website and data systems to enable consumers to file a complaint online.

North Carolina’s Managed Care Patient Assistance Program noted two drawbacks to its current database system. Any time staff would like to add or to make changes to a field on their intake screens, they must wait for their IT department to do so. Also, their database does not have a strong search function, so they are not able to search for terms in all fields unless they download the data into Excel and perform the search there.

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13. Most of the programs have also provided print of selected intake screens, which are included, and links to their most recent reports are also available.  

Montana Mental Health Ombudsman’s Office

Intake screens

2004 Annual Report

STARLink

Intake screens

Quarterly Report

HUSKY Infoline

Intake screens
Part 1
Part 2 
Part 3

Report not available. Program reports are not published.

Health Consumer Alliance

Intake screens are not available.

Report

Health Rights Hotline

Intake screens

Report

Governor’s Office for Consumer Health Assistance

Intake screens

Executive Report 2004

Health Education and Advocacy Unit – Office of the Attorney General

Intake screens

Report

Managed Care Patient Assistance Program

Intake screens are not available.

Report is not available.
 

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