International Children's Advisory Network

What if every pediatric research trial was designed alongside children and their families as partners throughout the entire process?

Photo of Meghan Gwara
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Founding Story: Share a story about a key experience or spark that helps the network understand why this project got started or a story about how you became inspired about the potential for this project to succeed.

Children are not little adults; they have a different physiology, and they do not respond to medication the same way. Almost 50% of medications used for children have not been studied in pediatric clinical trials, and in the NICU, that number is 90%. These drugs are used "off-label" meaning there is insufficient guidance for children's dosage. Pediatric trials are incredibly difficult to recruit for and maintain. By involving children in the process, we can help improve patients' experience.

Website

http://www.icanresearch.org

Location: Where is your organization headquartered? [State]

  • Connecticut

Location: Where is your organization headquartered? [City]

Hartford

Location: Where is your project primarily creating impact? [State]

  • Connecticut

Location: Where is your project primarily creating impact? [City]

Hartford, Connecticut; Atlanta, Georgia; Columbus, Ohio; Detroit, Michigan; Chicago, IL; Kansas City, MO; Houston, TX; Vanvouver, Canada; Barcelona, Spain; Sydney, Australia; Lyon, France; London, UK; Liverpool, UK; Nottingham, UK; Birmingham, UK; Bristol, UK; Aberdeen, UK

Problem: What problem is this project trying to address?

Pediatric clinical trials are inefficient; many centers never recruit a single patient. We propose that by involving children and their families in the process of designing a clinical trial or other health initiative, the procedures, pamphlets, and other processes will be more appropriate and comfortable for patients. This will lead to better patient recruitment and retention, resulting in more robust clinical trials and better dosing guidance.

Children with medical conditions and their caregivers deserve to have a voice into improving their interactions within the medical landscape. Too often, research studies, medical procedures, and pediatric innovations are created without talking to children and understanding their point of view. Does this protocol require too many blood draws or visits to the clinic? Is this pamphlet, consent form, or other material understandable to children and families? Is the wording appropriate, or could it be better? Am I measuring endpoints that children and their caregivers actually care about? How can we make this healthcare experience better for the young people who will be its end users?

The International Children's Advisory Network (iCAN) aims to improve pediatric health, medicine, research, and innovation by providing a strong, international voice for children and their families. We connect doctors, nurses, researchers, and other professionals with children who are experts at pediatric research, who are patients themselves, and/or who have an interest in science or medicine. There are over 300 children and young people in our network, and they have spoken at conferences, conducted surveys, written abstracts, presented posters, sat on panels, given speeches, provided feedback to study designs and materials, and much more.

Is your model focused on any of the following traditionally underserved communities?

  • No, not explicitly

Does your model work within any of the following sectors?

  • Community Development and Empowerment
  • Mental Health
  • Other

If you chose "other," please share the sector you work within here:

Primarily pediatric healthcare, research, and medical innovation

Year Founded

2015

Project Stage

  • Growth (the pilot has already launched and is starting to expand)

Example: Walk the network through a specific example of what happens when a person or group engages with your solution.

A researcher aproaches the iCAN network with the desire to engage with children and understand how his/her project can be improved. If appropriate, an iCAN representative will work with the researcher to determine the best way to interact with the network: focus group, in-person, online, survey, or other kind of engagement. Materials/questions are developed and passed back and forth between the researcher/company and iCAN representative. The questions and materials are then distributed to the children in the network in whatever medium was decided, the material and purpose is thoroughly explained to the children, and responses are collected and children's opinions/feedback/suggestions are used by the researcher to inform meaningful changes.

Impact: What was the impact of your work last year? Please also describe the projected future impact for the coming years.

Since we launched one year ago, our network has grown to include over 300 children from 18 chapters in 6 countries. Locally, each team meets about once a month with local medical professionals to deliver youth feedback in their work. Internationally, we have conducted 10 youth engagement projects with partner organizations.

"Active patient participation in medical product development and in healthcare in general is a major, positive trend. iCAN is unique in bringing the voices of children into the health arena. It is a special organization, global in reach, lead by children, and will (and is now already) having a real impact on how we think about pediatric clinical investigation and child health needs."
- Stephen Speilberg, MD, PhD, FAAP
Chair, iCAN Scientific Advisory Board
Former Dean, Dartmouth Medical and former Deputy Commissioner for Medical Products and Tobacco, US FDA

Organization Type

  • nonprofit/NGO/citizen sector

Annual Budget

  • $100k - $250k

Financial Sustainability Plan: What is your solution’s plan to ensure financial sustainability?

Individual teams can operate with little or no budget. Meeting space is donated through partnership with schools and hospitals. The 300+ children and their family members and advisors are volunteers.

Our expenses are mainly paying for families' travel to conferences and the coordination of the network: overhead expenses and one salaried position. Our funding has been through educational grants, and we are considering fee for service.

Unique Value Proposition: How else is this problem being addressed? Are there other organizations working in the same field, and how does your project differ from these other approaches?

To our knowledge there are no other organizations working to actively involve children and their families in the pediatric medical/research arena. If there are, we would like to invite them to collaborate with us under the umbrella of iCAN to have a broad, unified voice internationally.

This year, youth members presented an abstract on a survey they had developed and distributed at a medical conference. When pediatricians & researchers were asked why they would choose NOT to engage a group of children advisors, the number one answer (35%) was that they don't know where to find such a group.

Reflect on the Field and its Future: Stepping outside of your project, what do you see as the most important or promising shifts that can advance children’s wellbeing?

The medical field is constantly expanding and evolving to meet new needs and incorporate new knowledge. In industry, there has been a dramatic shift towards patient engagement; companies truly want to incorporate patients' ideas into their planning to improve the patient experience and overall quality.

Concomitantly, there has been a shift in attitudes towards pediatric clinical trials. In the past, this was seen as a roadblock to getting a new adult therapeutic to market on time; now there are specific pediatric centers within most companies. This will help children get better medicine.

Source: How did you hear about the Children’s Wellbeing Challenge? (the answer will not be public)

  • Email

Referral: If you discovered the Challenge thanks to an organization or person other than Ashoka, who was it? (the answer will not be public)

IPI- Don Lombardi

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Photo of Brittany Lothe
Team

Hi Meghan Gwara - Nice work! I would love to chat about our research project on Family Integrated Care and the human centered design approach we implored, in partnership with UCSF Benioff Children's. My direct email is brittany@willswayfoundation.us.

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