Multiple Organ Transplant (MOT) Group
Dr. Mucsi is a transplant nephrologist and clinical investigator with the Multiple Organ Transplant (MOT) group at UHN. His group is interested in the illness experience of kidney transplant recipients and patients with chronic kidney disease. They track patients’ experience by collecting patient-reported outcomes such as quality of life, side effects, psychological distress and other parameters.
For their work, Dr. Mucsi and his team need to maintain a large number of different questionnaires and a well-designed data collection system is essential. With DADOS, they’re able to maintain a number of questionnaires, create forms, and offer questionnaires through a web portal that supports multiple ways to be administered. DADOS can be administered within UHN using tablets and outside of UHN by sending a link via email using DADOS Connect. On the administrative end, the DADOS interface allows for data entry – data that is extracted from patient records – and entered manually.
Another requirement for Dr. Mucsi was a system that was secure and complied with privacy requirements. The DADOS system is installed on UHN Research servers and is secured on UHN grounds. All Patient Health Information (PHI) is encrypted within the database using Advanced Encryption Standard. The decrypted information is only accessible to appropriate users in limited locations in the system. Once a subject is entered into a study, the subject is subsequently referred by a unique identifier.
Additionally, data integrity is ensured through an audit log for all data entered in DADOS – the audit log shows changes made to the data and the username of the person who made the changes.
Initially, they tried a product that didn’t fit their needs and a coworker at the UHN Transplant Program brought DADOS to Dr. Mucsi’s attention. At first, Dr. Mucsi and his team conducted a pilot study where they created a number of questionnaires into the DADOS platform and asked patients with various stages of chronic kidney disease to complete questionnaires on iPads using the platform’s patient user interface. They aimed to assess the feasibility of collecting patient information using DADOS on tablet computers.
“The pilot study was a success, and most of our patients liked the fact that they didn’t require a lot of help with the platform.” – Dr. Mucsi
Recently, Dr. Mucsi engaged the DADOS team about using computer adaptive testing (CAT) to administer certain questionnaires and specifically several Patient-Reported Outcome Measurement Information System (PROMIS®)item banks. Using PROMIS® CATs substantially reduces questionnaire burden (on average, asking from four to six questions for every domain is sufficient, done within ~ 1 minute) while maintaining or increasing measurement precision. The DADOS team was able to integrate the two systems for Dr. Mucsi’s team and they’ve been using it since.
Dr. Mucsi and his team have now been using DADOS for more than two years. They have used DADOS at UHN, Humber River Hospital, Brampton Civic and St Michael’s Hospital (using tablets). They have recruited about 1000 patients across multiple studies.
Dr. Istvan Mucsi is a transplant nephrologist and clinical investigator with the Multiple Organ Transplant (MOT) group at UHN.
This unique coordinated team approach to caring for all transplant patients in one program gave it a strong foundation to develop major advances in transplantation and provide the most progressive clinical care. Medical teams and students from around the world come to learn about these best practices. He and his team use DADOS integrated with PROMIS® CATs to capture patient-reported outcomes (PROs).
The Food and Drug Administration (FDA) has finalized guidance aimed to facilitate the use of electronic health record (EHR) data in clinical trials. The guidance supports the idea of incorporating real-world evidence in decision making as a means of identifying and filling gaps in clinical investigations.
Read a summary at AJMC to learn about recommendations and best practices the guidance provides and the potential real-world data holds for health care.
DADOS offers flexible and powerful data capture solutions for your clinical trials. Our Clinical Data Repository (CDR) Connector can be leveraged to seamlessly pull data from EHR into the required electronic data capture workflow.
A recent study published in the Journal of Neurosurgery compared results from the Patient-Reported Outcomes Measurement Information System (PROMIS) with the Oswestry Disability Index and the 36-Item Short Form Survey to analyze its effectiveness for patients having minimally invasive transforaminal lumbar interbody fusion (MIS TLIF).
The study concluded that PROMIS scores correlated well with traditional indexes and surveys, with fewer questions, and can be successfully applied in assessing physical function in patients undergoing this procedure. Read the full article to learn about other conclusions drawn from the study.
Researchers and clinicians using DADOS Electronic Data Capture Platform have access to more than 40 PROMIS-CAT tools, allowing them to measure their patients’ progress with the fewest number of questions.
Patient-reported outcomes are fundamental in moving health care closer to a value-based model. A recent article published in Health IT Analytics lists some best practices for optimizing your collection of PROs, such as setting clear goals, using validated questions, and avoiding repetitions. Learn more about these and other recommendations to ensure your tools measure the desired outcomes: https://healthitanalytics.com/news/strategies-for-collecting-high-quality-patient-reported-outcomes
Interested in adding PROs to your practice? DADOS is a platform for securely collecting PROs and can help healthcare providers determine the right care for their patients in real-time.
Looking to skip complicated setup procedures and start working efficiently, immediately?
Contact us to try out a demo of DADOS or ask us questions to see if your project would be a good fit.
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