Assuring quality life: Using data to help families manage autism
iTARGET: database to help researchers record and share data.
CLIENT: iTARGET RESEARCH TEAM, BC CHILDREN’S HOSPITAL RESEARCH INSTITUTE, GENOME BC, SIMONS FOUNDATION AUTISM RESEARCH INITIATIVE
Autism spectrum disorder (ASD) is a developmental disorder that affects the way in which an individual interacts and interprets the world around them. In Canada, researchers estimate one in every 66 children between the ages of 5 to 17 is diagnosed with autism. It is also 4x more likely in boys. Autism can be in many forms, affecting individuals in different ways. Some are very mild and barely noticeable. Others are severe, affecting daily life.
iTARGET aims to get earlier and more accurate diagnoses of ASDs. Striving for the best possible results, the team works to help patients and their families manage the disorder.
– Dr. Suzanne Lewis | FCCMG, FRCPC, MD Director, iTARGET Project
To help the team reach their goals, the iTarget platform is a database to help researchers record and share data observed.
1. Secure data.
Governance is paramount. Patient information is sensitive and confidential, and has to be kept securely.
2. Research first.
To yield any useful insights, meticulous groundwork has to be done. At the same time, we have to ensure un-compromised data. We have to ensure raw data and its quality.
￼iTarget autism is Canada’s first family-centred, genetics-based initiative that fully integrates the research, clinical and patient communities within British Columbia
OUR PROCESS AND SOLUTION
1. Data is sensitive.
Research and study teams often include many roles from researcher, reviewer to administrators to interns. Not all roles have the same responsibilities and authority. The depth of their involvement also differs.
Not everyone on the team should access to all information. Those with managing and administrator responsibilities can dictate who gets certain access and permission. They can also lock patient files they deem necessary so others cannot edit without their approval. Patient information is sensitive and should be treated with care.
2. Quality Data, quality research, quality treatment.
Researchers have to collect data. The more data they receive from each patient, the more they can understand the individual and the disorder. Information can range from the patient’s symptoms and behaviour, to medical history of family members. This data has to be raw and free of bias. To achieve that, we added “security measures” throughout the collection process.
In studies and experiments, bias may occur when the subject is known or assumptions have already been made. To eliminate bias, data entry clerks may not know the identity of the patient. This sensitive information is removed unless the individual has a certain level of permission.
Important research data can range from medical history of a patient’s parents/siblings to distant relatives such as aunts and cousins.
Autism is not a singular event. It doesn’t only affect the individual suffering from it. Families and the doctors are also greatly impacted. It might even be argued that they feel more involved than the sometimes unaware patient. It is a full time job: taking care of, encouraging, and enduring the ups and downs with those diagnosed.
Autism is not just for children. These children don’t ever “grow out of it”. This is a life-long disorder. Learning and knowing how to handle and cope with their disorder would significantly improve their quality of life.
With this iTARGET, we hope to help medical experts easily review and obtain data of patients to create customized treatment plans and approaches. We hope to be the catalyst in helping researchers achieve their goals in helping patients and their families manage the disorder and develop best possible results. This way the patient and their support network will have better tools to handle and alleviate their often stressful “full-time jobs”.
Dr. Suzanne Lewis, FCCMG, FRCPC, MD | Director
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CASE STUDY: ITARGET