What is the Glucose a Vital Sign Letter-Writing Campaign?
The Glucose is a Vital Sign Letter-Writing Campaign invites parents of children and adults born with congenital hyperinsulinism (HI) to send letters to the hospital, birthing center, or birth practice where their child was born. The goal is to help healthcare providers understand the importance of recognizing and treating newborn hypoglycemia early.
Why is CHI organizing this campaign?
Many hospitals and birthing professionals may never learn that a baby born in their care was later diagnosed with HI, or that delayed diagnosis may have had lifelong consequences. By sharing their experiences, families can help close this knowledge gap and encourage improvements in newborn hypoglycemia screening, follow-up, and care.
Is this campaign intended to file a complaint against a hospital?
No. The purpose of the campaign is not to file a complaint or assign blame. The goal is education, awareness, and prevention. The letters are intended to respectfully share what happened after discharge and help improve outcomes for future babies.
Who can participate?
Parents of children with congenital hyperinsulinism may participate by completing the campaign form and sending a personalized letter to the hospital, birthing center, or birth practice where their child was born.
Participation is voluntary.
How do I choose the right letter?
The campaign includes four letter templates based on what happened during your child’s birth experience. You will choose the option that best matches your child’s story, including whether blood sugar was checked, whether HI was diagnosed in a timely manner, and whether symptoms were present or suspected.
How does the Jotform work?
The Jotform letter template collects the information you enter while completing the campaign letter template. Your responses will be used to generate a personalized PDF letter that will automatically be sent to you and to the email contact of the birthing hospital that you have provided. You will also be able to choose whether your information may be used to help track the campaign’s reach and impact.
What kind of questions does the form ask the participant to answer?
The questions include:
- Your name, mailing address, email, and phone number
- Hospital or location of their birth
- Year your child was born
- Age at diagnosis, if applicable
- Name and email of the recipient at the hospital
- Share your diagnosis story
- Share any neurodevelopmental challenges your child has, if applicable
Do I have to include information that I am uncomfortable sharing?
All questions are optional, and you may choose not to answer any questions you are not comfortable answering.
Will I be able to review the letter before sending it?
Yes. You will be able to save your work, edit and/or complete the form later, using an email link that can be sent to you once you begin completing the campaign form.
Who should I send the letter to?
Letters may be sent to appropriate professionals at the hospital or birthing facility, such as leaders in newborn nursery care, nursing, pediatrics, neonatology, patient safety, residency training, or hospital administration.
Should I send the letter to more than one person?
Yes, when possible. Sending the letter to more than one appropriate contact increases the chance that the information will be shared internally and may prompt discussion among hospital staff. You will need to create a new letter for each recipient.
Can CHI help me find the right hospital contacts and their email addresses?
Yes, CHI and international country captains can assist families in identifying the appropriate hospital contacts and their emails. We have tips on our Participant Page, contact emails for the country captains, and you can also reach out to info@congenitalhi.org for assistance.
What are country captains?
Country captains are HI patient advocates who are serving as campaign coordinators in their country or region. In addition to the CHI staff, they can help families identify hospital contacts and will work with HI medical professionals or local advocates to support outreach. Contact information for each country captain is available here.
What if I have access to my hospital’s portal?
Many hospitals have a portal where current or former patients can securely submit messages to their care team, the Patient Safety Committee, or other hospital administrators. This portal may be accessible either through a log-in account or on the hospital’s home page. In some instances, the contact page of the hospital’s website will have a free text box where you can directly send a message.
If this is the case for you, and you would like to send your letter via a secure portal of your hospital, we ask that you please complete the Jotform letter as instructed. You can then copy the text of the letter (which will be emailed to you as a PDF) and paste the letter into the hospital portal. Some portals may allow you to upload documents, as well, in which case you can download the pdf from your email and upload it to the portal.
What happens if a hospital responds?
A hospital responding is a great outcome because it ensures that the letter was received and read and could be the start of a continued dialogue between the hospital and the letter writer. This could lead to speaking opportunities and a chance to share more information about HI and the importance of early recognition of hypoglycemia and timely diagnosis of HI.
Participants may choose to share hospital responses or follow-up updates with CHI. These updates can help CHI understand the campaign’s reach and impact.
CHI can also help prepare you for your follow-up with a hospital by providing information and materials created to share with the medical community.
Could this lead to educational opportunities with hospitals?
Yes. The letters may lead to opportunities for families, advocates, or medical professionals to speak with hospital teams about HI and newborn hypoglycemia. CHI may be able to help arrange an educational presentation by a patient advocate, pediatric endocrinologist, neonatologist, or other HI professional.
How will CHI use the information collected through the form?
CHI will use only the information shared through the form with the participant’s explicit consent. Information entered into the Jotform will help CHI understand how many people participated. Participants may opt in to be contacted by CHI about any follow-up opportunities that may have resulted from the campaign. Any information included in an impact report will be deidentified.
Will my name or my child’s name be used publicly?
Impact reports will only share de-identified information, and will not include family names, the name or location of the doctor or hospital, or any other identifying details unless the sender of the letter wishes for their story to be made public and consents to being named. Participants will have to agree to be contacted if there is a quote from their letter that we would like to use or for other advocacy opportunities that may arise from this program.
Is this campaign GDPR compliant for participants in Europe and the United Kingdom?
CHI is committed to protecting participant privacy and handling personal information responsibly. Participation in this campaign is voluntary and requires affirmative consent before a letter can be submitted.
Information entered into Jotform is used to generate and send the participant’s letter and to help CHI understand the campaign’s reach and impact. CHI does not publicly share participants’ stories, names, quotations, or other identifying information without first contacting the participant and obtaining separate permission.
Campaign reports and summaries will use de-identified information. Participants may also choose whether they would like CHI to contact them regarding future advocacy opportunities or follow-up activities.
Participants may withdraw consent at any time by contacting CHI’s Data Protection Officer at jschmitt@congenitalhi.org. See CHI’s Privacy Policy for more information.
What if my family is involved in litigation or considering legal action?
If you or anyone in your family is engaged in litigation or considering litigation related toyour medical care, your child’s medical care, your child’s HI, or the hospital or birthing facility, you should consult with legal counsel before participating in this campaign.
Who developed this project?
This project of Congenital Hyperinsulinism International was developed in consultation and coordination with the Advocacy, Access and Awareness Group of the CHI Collaborative Research Network.
The letter-writing campaign was made possible by the LightCure Project of the European Union, CHI donors, and CHI CRN members.
Where can I learn more about HI advocacy?
The letters include a link to CHI’s advocacy page, which provides information on the needs of people born with congenital hyperinsulinism and steps hospitals can take to support early recognition and appropriate management.
How do I join the campaign?
Participants can join the campaign by completing the Jotform and submitting their letter so it can be sent to the appropriate hospital or birthing facility contacts. You can access one of four letter templates that best describe your/your child’s experience by visiting our participant information page [LINK] to begin your submission.
