Top 5 Questions
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- Limit who is allowed to see information that directly identifies you.
- Not identify you by name in papers and scientific reports resulting from this research.
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Data4Life plans to enroll 100,000 or more people to contribute health related information. The larger the number of people who participate, the clearer a picture researchers will have about how health is affected.
Data4Life is designed to last for a year or more. Your answers to different surveys could help health researchers see if changes in behavior or health-related habits have an effect on COVID. When we are all contributing our information, we may have a better understanding of what causes changes in our health and what we can do about it.
If you join, you can withdraw (quit) at any time for any reason without penalty.
General Questions
COVID affected the entire planet, and India was no exception. The long-term consequences of COVID are not yet known. Data4Life will ask you to answer surveys regularly about COVID. If you become infected, you will be asked about your symptoms. If you have already had COVID, Data4Life will ask you about any lingering symptoms. There will also be questions about vaccination status and behaviors you may engage in to keep yourself healthy.
When we have answers to surveys from all of the Data4Life participants, researchers can start to see patterns that may appear in a specific age, gender, geography. When these patterns emerge, researchers may identify new ways of identifying risk factors and the likelihood of long-term symptoms.
There is no payment to participants.
"Health research" may also be called "clinical research" or "medical research." Health research refers to scientific studies that are done to learn more about human health or behaviors. Health research is an important way to learn about diseases and improve care. Health research studies are designed to answer specific scientific questions. These studies might involve testing new health behaviors, medications, vaccines, medical procedures, or even medical devices. Usually research study involves first testing new scientific concepts on animals, such as rats or apes. However, Scientist’s believe that health research conducted in humans is important to show that certain research findings are truly useful for humans.
Health research data can be collected in many ways. Some ways that research scientists gather information include:
- Personal interviews with one person at a time
- Focus groups in which volunteers answers research questions in a small group setting
- Observation, or watching things happen over a period without asking people to change their behaviors
- Reviewing health records or documents that already exist
- Surveys or questionnaires that allow research participants to answer questions related to a specific disease or behavior being studied
Volunteering for health research programs can help scientists answer important questions and discover new ways to prevent, manage, or treat diseases. Researchers develop different types of research studies depending on the research question they are trying to answer and the type of information they need to collect. Some health research programs may ask you to take a new medication or practice a behavior that is different from what you usually do. Other research programs may ask you to give data by answering survey questions about your life or health. Data4Life is a research program that collects data this way. When you volunteer to join health research programs, the information you share could support important discoveries that could help people in the future.
Joining a research study allows you to make a noble contribution to science. It can also provide important positive benefits to the participant. Some benefits of participating in a research study are:
- You play a more active role in your own health care.
- You may have the chance to help others get a better treatment for their health problems in the future.
- You may be able to get information about support groups and resources.
In talking about the benefits of research, it is important to note that every research program has both benefits and risks. Scientists do their best to develop studies which present as little risk as possible for the participant, also referred to as “minimal risk.” The goal of health research is to identify the usefulness of the health behavior or medical product being studied. All health research programs are examined by a review board before they are carried out. The review board will make sure that the rights and welfare of the research participants are always protected. Programs that do not benefit people or are potentially harmful are not approved.
There are many different types of research studies. It is possible that you may or may not experience direct benefits from participating. The benefits, and possible risks, of any research study will be described in detail in the study consent form. It is important that you do not join any research program until you feel that the potential benefits and risks have been clearly explained to you. Data4Life is a research program with great potential benefits and the opportunity to improve health for all of India, including you and your family.
Researchers will use the data collected by Data4Life to study many different diseases and conditions. It is up to each researcher to decide what they study.
Surveys are used in health research to collect information in an objective way. Researchers have found that when people self-report in an anonymous survey the reported data can be very accurate. There are three main factors that have been shown to influence how likely people are to provide truthful responses to surveys. They include:
- Questions are asked in a way that is easy to understand
- Individuals feel sure that their answers will remain anonymous
- Individuals feel sure that they will not be penalized or punished for their responses
Health research studies must be carefully planned to make sure that the study question will be answered. The design of the study must be clear, well defined, and based upon evidence from previous science. This requires many detailed steps. The number of people needed for each research program is determined by detailed calculations. This estimate is known as the “sample size.” Carefully defining the sample size of a study helps the researchers make sure that the study data has enough variation. A study with too few or too many people will not provide the researcher with the right amount of numerical data to answer the research question.
Not all research studies require a large number of people. The number of participants differs based on the research question, the type of study and the stage of development. When researchers first begin exploring a topic, they begin with a small group of less than 200 people. This initial study is called a “pilot” program. The information gathered from a pilot study is not enough to prove a research question. Pilot programs help to show that it is reasonable to continue studying at a larger scale. A large research study includes more than 200 people. The goal of a large study is to gather enough information to confirm the outcomes that were seen in the pilot study and answer the research question. Researchers want to be sure that outcomes are accurate and well-supported. This is very important when scientists are trying out a new medication or medical procedure. The researchers want to fully test the process to make sure that it is safe and beneficial before giving it to the public.
The researchers who designed the Data4Life study hope to include a large number of people. This will allow them to be confident that the information that may be learned from this study is true and valid.
The primary goal of Data4Life is to gather information about how the COVID pandemic has impacted adults in India. Researchers hope to answer questions about how and why the pandemic affects the community, the economy, and individuals in their day-to-day lives.
Research is meant to benefit society, not just the people conducting it. All too often research participants do not see the results of their efforts. Sharing research data can lead to the development of better science. It can also influence better decision making for current policies or future research. Data sharing has the following benefits:
- It encourages more connection and cooperation between scientists, participants and the community.
- Sharing within the scientific community can lead to more innovation in research, which benefits the public in the long run.
- Sharing results with participants may promote trust in the research process.
- Sharing research findings allows participants to learn and know more about themselves.
The benefits of sharing research findings flow both ways. Any science that is developed from information shared by Data4Life participants will be made available publicly. Individuals are never identified or named when research findings are shared. As a participant, you will always have access to your responses via the Data4Life mobile application or website.
At this time, we do not yet know what we will discover from this study. We hope to gather enough information to build a meaningful collection of data and answer many scientific questions about the effects of COVID. Insights from Data4Life will be shared with participants and published in scientific journal.
If you still have questions, please contact us.
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