Monitoring Disparities in Chronic Conditions - Frequently Asked Questions

Who do I contact if I have any questions?

If you have general questions you may contact the study researchers through the MDCC study center at 1-800-225-8890. You also may e-mail the MDCC study center at MDCCstudy@battelle.org. Para esta información en español llame al that'1-866-215-6616. 
 
If you have specific questions about how you were recruited, the information included in the recruitment letter, or have any concerns you may call the MDCC Study project officer at +1-206-897-2841. 
 

How did you get my address?

Participants for the study are recruited in one of two ways:
  • We randomly select households using a commercially available list of addresses and send letters asking people if they would like to participate.
  • We also ask local hospitals, clinics, and physician offices to mail information letters to patients with one of the health conditions we are studying. To do this, they searched their databases to find patients who had the conditions we are studying. These facilities may mail the letters directly to their patients or work with the Institute for Health Metrics and Evaluation (IHME) to mail these letters. The letters to patients contain an “opt-in card” for the patient to return indicating his/her approval to participate in the study.

    The research team at IHME will then contact the patient using the information provided on the opt-in card to enroll him/her in the study. IHME has no access to the patient medical record. IHME will only contact the patients who returned their opt-in cards using the contact information provided on the card. These measures are in place to ensure the privacy and confidentiality of all patients.

How do you protect confidentiality?

The MDCC Study takes the confidentiality of participants very seriously and follows all legal regulations and requirements during both the recruitment and the study itself. 
 
MDCC staff at no time has direct access to any individual’s medical records during recruitment for this study and will only obtain information from a participant’s medical record if they agreed to participate in the study. Each study participant has the option to release his/her medical record by signing a consent form to give such permission.  
 

What conditions are you researching?

This study is examining the health of people living in King County with the ultimate goal of finding better ways to address chronic diseases within our community. We aim to understand the reasons for disparities in health outcomes by examining the underlying risk factors (such as poor diet or lack of physical activity), proper access to medical care (such as lack of health insurance or underinsurance), and quality of medical care (such as the time from the occurrence of an event until the receipt of the indicated intervention). For a full list and more information on the conditions we are interested in, please visit MDCC Study Conditions of Interest. 
 
It is important to note that receiving a recruitment letter for the MDCC Study does not mean you have a particular illness or medical condition. This study is not meant to inform potential participants about a diagnosis, but to gather important information on the health of our community and how the medical system is responding to the community’s needs.  
 

How can I participate in the study?

Participants in the study are initially contacted by mail and asked to participate. If you have not received a letter and information statement, you are not able to participate. If you have received a letter and wish to participate, please mail back the postcard provided with the letter or contact the MDCC Study center by phone at +1-800-225-8890 or by email at MDCCstudy@battelle.org.
 

What is involved in participating?

There are three phases of the study, and you may be eligible for one, two, or all three phases. Phase 1 includes an initial survey that you can complete by telephone, Internet, mail, or in person, and a follow-up survey that you can complete by Internet or mail. Phase 2 includes a review of medical and pharmacy records if you have one of the chronic conditions we are studying. Phase 3 includes a physical examination (please note, however, that we are no longer offering physical exams in this study). More information about these study phases can be found here: Phase 1, Phase 2, and Phase 3.
 

I received a web passcode in the letter sent to my house. How do I use it?

The study does not always have a phone number for potential participants. If you are someone for whom we do not have a phone number, your letter will give you the option of simply logging onto a survey on the web. Go to the web page provided and enter the unique web passcode shown in your letter.

I did not receive an opt-in card in my recruitment mailing. How do I participate in the study?

Some people will receive a letter asking them to participate in the web survey only. If you are one of these people, you will not receive an opt-in card and your letter will include directions for logging onto the survey on the web. Go to the web page provided and enter the unique web passcode shown in your letter.  

What kinds of questions are on the surveys?

Questions on the initial survey will ask you about your general health (including questions about alcohol/tobacco use), diet, physical activity and exercise habits, well-being (including emotional health), and demographic information (education, employment, marital status, household items, income, etc.). If you have a chronic health condition such as diabetes or heart disease, you will be asked additional questions about your condition, prescription medication you are taking, other treatments for your condition, insurance status, and information about your hospital and/or physician visits. The follow-up survey asks questions about your dietary history and any medications you are taking. Although complete information is important to the study, you may skip any question you do not wish to answer.
 

What will be done with my personal information?

All of the information you provide will be confidential. We will use a unique study identification number to code all of the information you give to us. We will keep the link between your identifying information and your study identification number in a secured location until Dec. 31, 2014, after which we will destroy any information that could link your name to the coded information. Anonymous study data will be kept indefinitely. If we publish the results of this study, we will not use your name. 
 

What are the benefits of participating?

There is no direct benefit to you from participating in the survey phase of the study. We hope that the results of this study will help researchers better understand and improve the health of residents of King County. You will not receive monetary compensation for participating in this study. You may refuse to participate, and you are free to withdraw from this study at any time without penalty or loss of benefits to which you are otherwise entitled.
 

Are there any risks?

The risks to this study include invasion of privacy and breach of confidentiality. You are free to decline to answer any questions. Some people do not want information from their medical records used for research. If you feel this way and are selected to participate in Phase 2 of this study, you are free to decline to release your medical and/or pharmacy records to the researchers.
 

Why am I being contacted twice about Phase 2 of the study?

As of July 15, 2011 participants who are eligible for Phase 2 of the study are asked permission to review your medical and pharmacy records for the past 5 years. If you agreed to participate in Phase 2 of the study before July 15, 2011, you signed a consent form allowing study researchers to review the past 2 years of your medical records. As we received the first wave of medical record review consent forms, it became clear that in some cases it was important to review up to 5 years of medical records to better track important items such as access to care, quality of care, and follow-up care. If the study physician reviewing your medical records deems it necessary, you will be contacted by the study team to see if you are willing to let the study review an additional 3 years of your medical records (for a total of 5 years). 
 

Why are you asking for my social security number?

To better understand the causes of disparities in health outcomes in Seattle, we need to be able to examine different data sources for an individual in order to have a clear picture of the risk factors, access to medical care, and quality of medical care. By examining medical records and medical encounters we will find out if residents are receiving the appropriate medical care and the length of time it takes to receive it. This is an important part of the study to determine the factors driving disparity. The social security number is a unique identifier that allows us to do so. Before reviewing any of your medical records, we will ask for your written consent. Your social security number and your identity will be protected. Providing your social security number is voluntary and you can choose not to provide this information. You are not required to provide your social security number to proceed with the study. 
 

What data sources will be linked using my social security number?

There are several data sets that the researchers will link to better understand the causes of disparities among residents of Seattle. These data sets depend on the risk profile and medical status of each respondent. These data sets include a physical exam conducted by the study, your existing medical records (inpatient or outpatient), your pharmacy records, your emergency medical records (such as 911), your Medicare records, and national mortality death index maintained by the Centers for Disease Control and Prevention.  
 
Prior to our study most researchers used probabilistic linkage to gain insight on some of these important determinants of disparity. Our study will enables us to use a SSN to do the linkage correctly. Indeed, an advantage of our work is the ability to improve on previously used methods and to produce a better probabilistic linkage algorithm. 
 

How are the University of Washington and Public Health – Seattle & King County involved in this study?

The MDCC Study is being conducted by the Institute for Health Metrics and Evaluation (IHME) at the University of Washington in partnership with Public Health – Seattle & King County (PHSKC), the county public health department. 
 
How IHME is involved: IHME is part of the University of Washington (affiliated with the School of Medicine and the School of Public Health) and is conducting this study. That means all study information (or data) collected is securely stored at IHME, and all analysis with identifiable data is conducted at IHME (only authorized study personnel have access to identifiable data). 
 
How PHSKC is involved: PHSKC is collaborating with IHME on this study. Specifically, they are conducting physical exams for participants who are selected and consent to an exam. All study physical exams are conducted at PHSCK clinics. Also, Dr. David Fleming, the Director and Health Officer at PHSKC, is a co-PI (primary investigator) on this study. As a co-PI he acts as an advisor on the technical pieces of this study and on how the project is implemented.  
 
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