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Many healthcare systems use electronic health records. Researchers use data from these records in their studies. Some records have missing or incorrect data. When this happens, people might not be able to trust a study's results. The research team wanted to:

• Create guidance to judge whether data that a study used were high quality
• Find new ways to display the quality of data
• Learn why researchers don't always report the quality of data that they used in studies

To access the methods and software, please visit the DQCODE-A-Thon GitHub.

Patients often take surveys about their health or quality of life. Results from these surveys can help doctors meet patients' needs. Young children can't fill out surveys by themselves. They may not be able to read or understand the questions. Most often, parents or hospital staff read the questions aloud, or parents answer the questions for their children. But this method may not give accurate results.

In this study, the research team tested three surveys for children ages 4 to 12 who are going to have or who recently had surgery. The first survey asks about general health. The second survey asks about feeling worried before surgery. The third survey asks about pain after surgery. A computer program reads the survey questions aloud. The surveys are animated and choices for the answers appear as cartoons.

The team wanted to learn if the surveys were

• Accurate, or correctly capturing how the children were feeling
• Reliable, or if children answered in a consistent way when asked similar questions

Dementia is a health problem that can cause memory loss, trouble doing daily tasks, and behavioral problems. Sometimes patients with dementia and their caregivers have goals for patients that their usual medical care doesn't include. For example, caregivers may want to maintain patients' social activities in the community. They may also want patients to continue to live at home.

The research team wanted to test a process called Goal Attainment Scaling, or GAS, to see if patients and their caregivers could identify, set, and meet goals that were important to them. The team also wanted to see if GAS was valuable to patients and their caregivers.

Many research studies seek to learn how treatments affect patients' quality of life. Quality of life includes mood and energy. It also includes how people view their roles in their families or communities and whether they can perform those roles. Researchers use surveys to ask about patients' quality of life. But patients may answer the same question differently depending on different characteristics, such as their age or where they live. Some patients may think about their work roles while others may think about their families or social lives. How patients think about quality of life can affect what researchers learn about the effects of treatment.

In this study, the research team tested two surveys they created to measure differences in how patients think about their quality of life. The first, long survey had 74 questions, and the second, short survey had 23 questions.

Patient-reported outcome measures, or PROMs, are surveys that ask patients how they feel and what activities they can do. All PROMs have measurement properties. These properties help researchers understand how well the PROM was designed. For example, one property is the ability to get consistent responses over time. Another is how accurately the PROM measures how patients feel about a health problem. But researchers may not consistently report these properties in studies about PROMs.

In this study, the research team created guidance about reporting measurement properties in studies on PROM.

Healthy sleep is important for a child's well-being, school performance, and mood. Doctors can ask children about their sleep health to identify and treat sleep problems. However, few reliable surveys are available for doctors to use to ask children about their sleep.

In this study, the research team created sets of survey questions that asked children or their parents about sleep health. The team interviewed children and their parents to make sure they could understand the questions and that the questions included sleep health topics important to them.

Understanding which aspects of health and wellness are most important to patients living with HIV can help clinics improve care. Clinics often have patients complete surveys about their health and wellness. This study created new sets of survey questions for people living with HIV.

This study had two parts. In the first part, the research team asked patients living with HIV and their clinicians, such as doctors and nurses, what health and wellness topics they found important. In the second part, the team created sets of survey questions for two topics: domestic violence and social support. The team then asked patients living with HIV to answer the questions.

Understanding patients' expectations and their experiences can help hospitals improve care. Hospitals often send surveys to patients to ask about their care. To create surveys quickly, hospitals sometimes pick questions from an item bank. An item bank is a list of survey questions available to use about a specific topic.

In this study, the research team created an item bank about childbirth care. The team used the item bank to create and carry out a survey about women's preferences and experiences with care during and after childbirth. The team looked at which questions related closely to women's overall ratings of their hospital care.

Chronic pain, which lasts for months or even years, can disturb people's daily lives and their relationships with others. Doctors want to measure how chronic pain affects people's lives so they can help their patients manage pain.

In this study, the research team wanted to measure two aspects of living with and managing chronic pain:

• Pain appraisal describes how people think about their pain. It measures how much people worry about their pain and how well they cope with pain or distract themselves from thinking about it.
• Pain-related self-efficacy describes how confident a person is that they can live well with pain.

The research team created two pools of questions, called item banks, to measure each of the two aspects of living with chronic pain. From these larger item banks, the team created and tested brief versions using two and six questions. These brief versions take people less time to finish than the full item banks.

Patient-reported outcome measures are surveys that ask patients about their health or well-being. These surveys may include questions about sleep, depression, or pain. Many of the surveys now in use don't focus on a specific health problem.

The research team wanted to create and test a process for adapting patient-reported outcome measures for specific health problems. To test this process, the team developed surveys for two health problems, one for heart failure and one for knee arthritis.

A randomized controlled trial, or RCT, is often the best way to learn if one treatment works better than another. RCTs assign patients to different treatments by chance. But RCTs are not always feasible. In such cases, researchers can use observational studies. In observational studies, researchers look at what happens when patients and their doctors choose the treatments. Traits such as age, gender, or health status may affect treatment choices. These traits may also affect patients' health, making it hard to know if changes in patients' health are due to treatment or to patient traits.

To figure out whether changes in patients' health result from treatment or something else, researchers use statistical methods. Two of these methods are:

• Propensity score, or PS. PS methods compare the health of patients who have similar measured traits but received different treatments. These traits are in patient health records.
• Instrumental variable, or IV. IV methods account for things that may affect treatment choice and patients' health but aren't in the patients' health records, such as personal preference about treatment.

But existing PS and IV methods don't work well when data sets include a lot of traits and health conditions for each patient. Such data sets are called high-dimensional data. In this study, the research team created and tested one PS method and one IV method for use with high-dimensional data.

During care transitions, patients move from one care setting to another, such as from the hospital to home. If not done well, these care transitions can result in health problems for patients and the need for them to return to the hospital.

Healthcare organizations can use patient surveys to measure the success of care transitions. One survey about the quality of care transitions already exists. The survey was created with input from patients but with no input from caregivers and healthcare providers. In addition, the survey doesn't ask about topics that patients may find important, such as caregiver involvement and the time after care transitions.

In this study, the research team created and tested a new survey. To create the survey, the team asked for input from patients, caregivers, and healthcare providers. The team tested whether the survey was

• Valid, or able to correctly capture what it intends to measure
• Reliable, or able to get consistent answers

Patients and their healthcare providers, such as doctors and nurses, can use survey scores to track the symptoms of illnesses like rheumatoid arthritis, or RA, over time. Tracking symptoms in this way can help them understand if a treatment is working well for a patient.

When researchers create and test these surveys, they want to be sure that patients' survey scores match how severe patients feel their symptoms are. Researchers also want to know what changes in survey results show that symptoms have changed so much that patients might want to change treatment.

In this study, the research team had patients with RA and providers read stories that described what patients felt like with higher and lower scores of two symptoms:

• Fatigue, or lack of energy
• Pain interference, or how much pain interferes with their lives

Patients and providers decided whether each story showed a mild, moderate, or severe level of symptoms. They also gave their views about how large a change in scores would need to be to show that pain or fatigue was getting better or worse.

Patients are often more satisfied with care when it matches their goals. To provide care that matches what matters to patients, doctors and other clinical staff need to communicate well with patients so they can learn about their needs and concerns. Healthcare organizations can use patient surveys to measure how well clinicians communicate with patients. To be useful, a survey needs to be

• Valid, or correctly capturing how well doctors communicate
• Reliable, or getting the same results over time

In this study, the research team created and tested a survey for patients getting care for colorectal cancer that asked about communication between the patient and their care team.

Patients' beliefs and expectations may affect how they respond to treatment. But these feelings are hard to measure.

In this study, the research team created a set of surveys called Healing Encounters and Attitudes Lists, or HEAL. HEAL helps researchers understand patients' beliefs and expectations about treatment. HEAL measures patients'

• Connections with their doctors and nurses
• Feelings about their doctor's office and staff
• Expectations about treatment
• Outlook on life
• Strength of spiritual beliefs
• Comfort with complementary and alternative medicine, or CAM
• The team also used the Patient-Reported Outcomes Measurement Information System, or PROMIS, to measure patients' pain, health, and function. PROMIS is a set of surveys researchers and doctors use for many diseases and treatments.

The team wanted to learn if HEAL could predict how patients respond to treatment for chronic pain. Chronic pain is pain that lasts for months or years. The team used HEAL and PROMIS to look at why some groups of patients respond differently to treatment for chronic pain. Patients got either conventional treatment, such as physical therapy or medicine, or CAM, such as acupuncture, chiropractic treatment, or massage.