Roberta Carson has taken the lessons she learned while caring for her son during his 27-month battle with a terminal brain tumor and used them to develop the ZaggoCare System to help other caregivers become better informed and more effective in their care of their loved ones.

In the latest edition of our Caregiving Chronicles Q&A series, we spoke with Carson, the president of Zaggo, Inc., to discuss teh ZaggoCare System.

Caregiving MetroWest: What is ZaggoCare?
Carson: Zaggo is a non-profit organization dedicated to helping patients and family caregivers be more engaged, effective members of the medical team while managing any type of illness or injury. The goal is to help people get the best medical outcome possible while reducing stress on the patient and caregiver. The ZaggoCare System is a unique product which provides extensive practical guidance in an 80-page guidebook along with a full set of organizational tools to easily implement the advice and stay organized.

Being an engaged member of the medical team is more critical than most people think. For instance, according to a 2003 study (Patient’s Memory for Medical Information, by Roy P.C. Kessels, PhD, Journal of the Royal Society of Medicine), most people don’t realize that 40-80 percent of medical information heard at a doctor’s office is immediately forgotten. To make matters worse, what is recalled is generally only remembered correctly 50 percent of the time. Additionally, doctors, nurses, pharmacists, lab technicians and other medical professionals are prone to mistakes like any other person.  It is crucial for the patient and family to stay engaged in the process, communicate effectively, take clear notes and stay organized.

CGMW: How did you get the idea to start ZaggoCare?
Carson: I started Zaggo, and created the ZaggoCare System, based on my experience of caring for my son Zachary during his 27-month battle with a terminal brain tumor. Although we worked hard to be the best caregivers we could be, there were many times where my husband and I asked ourselves why nobody told us something sooner, or why we didn’t figure something out sooner. Being a patient or family caregiver is an overwhelming, difficult situation for which no one is prepared.

After Zach’s death, many friends began reaching out to me for advice on navigating a medical issue. After countless hours on the phone, I decided I should start a non-profit and create a product to help a wider group of patients and families.

CGMW: Can you tell us a little about your background and your role with ZaggoCare?
Carson: I had no experience in being a caregiver for anyone with a serious illness until Zach was diagnosed. Over the 27 months of caring for Zach, I learned to manage as time passed. It helped that I am an engineer by training (as is my husband) and am very organized and detail oriented.

I came up with the idea of writing a guidebook for patients and families and providing them with the tools they will need to stay organized. After writing the initial draft of the guidebook, I was fortunate to have 35 people (medical professionals, patients or family caregivers) provide additions and edits to the guidebook. Today, the guidebook is the comprehensive advice based on the personal experiences of a large group.

We are a 501(c)3 non-profit organization. I am the founder and President. I also have a fabulous Board of Directors, an Advisory Board and a team of corporate partners. Also, 100 percent of the profits from the sales of the ZaggoCare System will be donated to a pediatric brain tumor research fund in memory of our son.

CGMW: How does ZaggoCare help caregivers?
Carson: The ZaggoCare Guide tells you everything you need to know that no one has the time to tell you.

The Guide provides the information you need to be the best possible patient or family caregiver.   The Guide helps you:
•    Ask the right questions so you can understand your diagnosis and treatment options
•    Understand, organize and dispense medications to make it easier to properly follow even complicated medication regimens
•    Have meaningful conversations with your doctor
•    Ensure your medical records are accurate among all doctors on your team
•    Take accurate notes at the doctor’s office and at home
•    Stay organized
•    Manage bills and insurance issues

CGMW: What products and services do you offer?
Carson: Our website provides helpful information and resources:
•    E-commerce site for purchasing the ZaggoCare System
•    Customizable medication and treatment chart
•    Blog on topics of interest to patients and families
•    Resource center
•    Tip of the day
•    “20 things you need to know”

CGMW: How is the information you provide compiled and vetted?
Carson: As mentioned above, the information provided in the ZaggoCare Guide was written by a large group of patients, family caregivers and medical professionals.  To be clear, we provide no medical advice in the Guide. I personally research topics for the blog and for helpful sites to add to our resource center.

CGMW: Is ZaggoCare tailored to help in the care of people of a certain age or with certain health conditions, or is it applicable to any caregiving situation?
Carson: The ZaggoCare System is useful to anyone managing an illness or injury as a patient or family caregiver. This includes acute illness such as cancer; chronic illnesses such as diabetes, heart disease, Parkinson’s, and multiple sclerosis; as well as serious injuries such as head trauma or spinal cord injuries.

As with all health management tools, it is important for ZaggoCare System users to have the cognitive and organizational skills necessary to do tasks such as reading the Guide and taking accurate notes. For patients who are not up to the task, the ZaggoCare System is a great tool for family caregivers. When multiple family members are caring for an aging parent, the ZaggoCare System allows them to easily share important medical information and stay organized, making it easy for all family members and the medical team to have access to the most current information.