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KIDS: Providing Children and Families a Voice in Medicine, Research, and Innovation

The active involvement of patients in health care choices, diseases, research, and innovation is an area of recent focus for many public and private entities (e.g., FDA’s Patient-Focused Drug Development initiative).  As an innovative method to engage children, the KIDS (Kids and Families Impacting Disease Through Science) project was launched as an advisory group of children, adolescents, and families focused on understanding, communicating about, and improving medicine, research, and innovation for children. KIDS is a unique collaboration between the American Academy of Pediatrics (AAP) Section on Advances in Therapeutics and Technology (SOATT), local AAP Chapters, children’s hospitals, local schools, and other partners.

The objectives for the KIDS project are as follows:

  • Learn, teach, and advocate for medicine, research, and innovation that improves the health and well-being of children;
  • Engage in the process through projects and consultation activities with hospitals, researchers, and other partners in the public and private sectors;
  • Provide input on research ideas, innovative solutions, unmet pediatric needs, and priorities;
  • Contribute to the design and implementation of clinical studies for children (e.g., assent, monitoring tools, schedules, etc.);
  • Serve as a critical voice for children and families in the medical, research, and innovation processes.

KIDS launched as a pilot program in Connecticut in September 2013 and will be expanding to other states in the US (e.g., Utah, New Jersey). The KIDS Connecticut Team has participated in meetings at Connecticut Children’s Medical Center (Hartford, CT) and Yale-New Haven Children’s Hospital, a Research Summit at Pfizer’s Connecticut Laboratories, and an advisory session with Mr. David Tabatsky, author of Write for Life.

In addition, the team attended the AAP’s Healthy Children Conference & Expo in Chicago in March, at which they staffed an exhibit booth highlighting their work and the importance of research and innovation for children. They also conducted survey-based research by collecting more than 300 responses with a focus on participants’ opinions of the importance of research in their lives and the role of children in research. Three KIDS Team Members delivered an invited Learning Zone presentation for conference attendees discussing the importance of research, the work of the KIDS Team, and the vision for future expansion. Finally, the KIDS interacted with numerous AAP leaders and staff members throughout the weekend. Overall, the KIDS involvement in the conference was a resounding success as each Team Member was articulate and passionate about their work and the importance of medicine and research. Feedback from attendees, exhibitors, and AAP leadership/staff was overwhelmingly positive. The Team will also be attending the Pediatric Academic Societies meeting in Vancouver in early May and will be collaborating with a similar children’s advisory group located in that city.

In addition to a KIDS expansion in the US, SOATT is working with existing young person advisory groups and other partners to develop an international network of children advisors. The children, families, leaders, and partners are very excited about the potential opportunities for these teams and the future network to make a significant impact on the health and well-being of children worldwide.

Do you think it is important for children to be involved in shaping pediatric medical research? Have you had experience with kids getting involved in their health care? What was the outcome? Share your thoughts in the comments section.

If you are interested in participating in this project or would like more information, please contact Charlie Thompson (charles.a.thompson@pfizer.com).

Toys “R” Us Guide Makes the Season Brighter for Children with Special Needs

As we enter the holiday season, shoppers have the opportunity to turn to the Toy Guide for Differently-Abled Kids – an annual publication put out by Toys “R” Us. This valuable resource is designed to give parents, relatives, friends and professionals the information they need to make more educated choices about purchasing gifts for children with unique talents and abilities.

Paul DeMiglio

Paul DeMiglio

Gabby Douglas, a gold-medalist gymnast in the 2012 Olympics, is featured on this year’s edition and says the guide is “filled with everyday playthings, specially chosen to help kids build key skills, like creativity, language and critical thinking, reach new milestones and have fun at the same time.” Douglas is the most recent in a long line of celebrities and philanthropists who have appeared on the guide’s front cover, including Whoopi Goldberg, Eva Longoria and Maria Shriver.

“We understand the joy of watching a child experience victories through the magic of play, whether they’re learning to catch and throw a ball, role-playing through dress-up or learning to count using an app on their very first tablet,” said Kerry Smith, Toys “R” Us spokesperson. “For nearly two decades, we have been providing parents and caregivers with product recommendations for children with special needs through the trusted Toys“R”Us Toy Guide for Differently-Abled Kids. This annual resource is filled with everyday playthings selected as appropriate in helping kids build critical skills and reach new milestones – all while having fun at the same time.”

The guide provides shoppers with specific questions to help ensure that their selections match the developmental needs of the children for whom they’re shopping. Customers are encouraged to consider whether the toy fosters creativity and self-expression, if it provides a challenge without being frustrating, if it allows for adaptability to the child’s needs, whether the toy reflects the child’s interests and age, and much more.

The guide also shares numerous safety suggestions for parents and guardians so they can more effectively prevent accidental injuries and help children understand how to keep out of harm’s way during playtime:

  • Never leave a child unsupervised
  • Read labels for ability
  • Survey the play area
  • Establish concrete rules
  • Use visual warnings
  • Review and repeat
  • Prepare for off-site play dates
  • Click here for the full list

The toys were evaluated and tested by the National Lekotek Center, a non-profit that examines toys’ therapeutic qualities in aiding the development of children with physical, cognitive or developmental disabilities. A leader in the field with almost 30 years’ experience, Lekotek studies and reviews hundreds of toys, selecting those that benefit children. This information is then sent to Toys “R” Us for placement in the guide. Toys are categorized according to various child development needs such as visual, auditory, social skills and motor skills, among others.

If you would like to know more about the guide and the company’s philanthropic events, visit the new Toy Channel on YouTube, which includes an “‘R’ News” section that features information about charitable contributions. The guide can be found in any Toys “R” Us store or can be viewed online here.

Have you or someone you know ever used the Toy Guide for Differently-Abled Kids? Did it address your questions and make toy shopping for children with special needs easier? What challenges have you faced when purchasing toys for children with special needs, and what resources have you found helpful when making decisions?

Categories: Access to Care