Most parents unaware of medical research opportunities for their kids

July 25, 2011 Volume 13 Issue 2
  • In the U.S., 11% of adults and 5% of children have participated in medical research.
  • 84% of parents are unaware of medical research opportunities for children.
  • Income, not race/ethnicity, is related to participation and awareness about medical research opportunities for kids. 

Over the last 100 years, infant mortality in the United States has been reduced by 90 percent. Millions of deaths from diseases such as polio, diphtheria, pneumonia and influenza have been prevented by vaccines. Thousands of children with diseases such as cystic fibrosis, sickle cell disease and diabetes now often survive beyond childhood, into their adult years.

All these advances have been made possible through medical research. Importantly, successful pediatric research requires the voluntary participation of children and the support of their parents. Not much is known about public participation in medical research for children, or for adults.

In January 2011, the C.S. Mott Children’s Hospital National Poll on Children’s Health asked adults and parents about their views on medical research and past participation.

Participation in Research

About 1 in 9 adults have participated in medical research. In contrast, 1 in 20 children have participated (Figure 1).

Participation in medical research by adults is higher among non-Hispanic whites (14%) than among Hispanics (4%) or non-Hispanic blacks (2%).

Participation in medical research by children does not differ by children’s race or ethnicity. In addition, children’s participation is not related to whether the children themselves have fair or poor health.

Awareness of Medical Research

Most adults (68%) are aware of medical research opportunities for adults. In contrast, the majority of parents (84%) are not aware of medical research opportunities for children.

Parents with higher household income levels and who have fair or poor health themselves are more likely to be aware of medical research opportunities for children or to have had their children participate in medical research.

Implications

Medical research is the backbone of improving medical care. Without volunteers, medical research cannot move forward.

In May 2008, the C.S. Mott Children’s Hospital National Poll on Children’s Health reported that 10% of adults and 4% of children in the United States had participated in medical research. Such low rates of public participation raised serious questions about how sustainable medical research can be. Now, three years later, researchers and research institutions (both public and private) have not succeeded in moving the needle.

Awareness about research opportunities, which is a necessary step before participation, is reasonably high among among adults but strikingly low for children’s research. To improve participation rates among children, boosting awareness must be a major priority.

While there are disparities related to race/ethnicity for adult participation in research, there are no racial/ethnic disparities for kids related either to participation or awareness. This positive finding sets an equitable foundation for future efforts to expand awareness and then recruit children for medical research.

Data Source

This report presents findings from a nationally representative household survey conducted exclusively by Knowledge Networks, Inc. (KN), for C.S. Mott Children’s Hospital via a method used in many published studies.  The survey was administered in January 2011 to a randomly selected, stratified group of adults age 18 and older (n=2,150) from the KN standing panel that closely resembles the U.S. population.  The sample was subsequently weighted to reflect population figures from the Census Bureau.  The survey completion rate was 60% among panel members contacted to participate.  The margin of sampling error is ± 1 to 3 percentage points.

Director: Matthew M. Davis, MD, MAPP
Associate Director: Sarah J. Clark, MPH
Manager & Editor: Dianne C. Singer, MPH
Data Analyst: Amy T. Butchart, MPH

Findings from the C.S. Mott Children's Hospital National Poll on Children's Health do not represent the opinions of the investigators or the opinions of the University of Michigan.  The University of Michigan reserves all rights over this material.

[ALL RESPONDENTS]

Medical research is conducted to learn new things about medical care. Medical research may include:

  • Clinical studies on the benefits of a drug or vaccine
  • Clinical studies on the safety and side effects of a drug or vaccine
  • Comparing different treatments or prevention options available for the same disease
  • Testing ways to detect diseases

 

Q1. Have you ever participated in any type of medical research?

  • Yes
  • No

[IF Q1=NO]

Q2. Have you ever been invited to participate in any type of medical research?

  • Yes
  • No

[IF Q1=NO]

Q3. Have you heard about or seen opportunities for adults to participate in medical research?

  • Yes
  • No

[FOR PARENTS]

Q4. Has/have your child(ren) ever participated in any type of medical research?

  • Yes
  • No

[IF Q4=No]

Q5. Has/have your child(ren) ever been invited to participate in any type of medical research?

  • Yes
  • No

[IF Q4=NO]

Q6. Have you heard about or seen opportunities for children to participate in medical research?

  • Yes
  • No

Participants were also asked demographic questions on gender, race/ethnicity, annual household income, education and insurance status.

All information is the sole property of the University of Michigan C.S. Mott Children's Hospital National Poll on Children's Health.  It can only be used if there is an acknowledgment that "The information came from, is copyright by and is owned by and belongs to the Regents of the University of Michigan and their C.S. Mott Children's Hospital National Poll on Children's Health. It cannot be republished or used in any format without prior written permission from the University."

C.S. Mott Children’s Hospital National Poll on Children’s Health
Director: Matthew M. Davis, MD, MAPP
Associate Director: Sarah J. Clark, MPH
Manager & Editor: Dianne C. Singer, MPH
Data Analyst: Amy T. Butchart, MPH
 

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Medical Research Opportunities for Kids