data_collection

At ICHOM, we understand that health outcomes measurement is a new concept. That’s why we’d like to share best practices in data collection and reporting of outcomes. It’s our hope that you can take these recommendations back to your practice – and get the most from this new approach. Outcomes measurement starts with effective data collection. Here are a few tips to make sure you obtain quality data.
Use multiple sources
We tell everyone to measure the full ICHOM outcome set – which contains outcomes that are both physician reported (clinical data) and patient reported (usually patient surveys).

Make data collection part of the care process
It’s important to make data collection a natural part of the care process and workflow – so it doesn’t add administrative burden. For example, patients could complete information on a tablet while waiting for their appointments. Then physicians and patients could quickly discuss the information together, and use it to decide on treatments.
Use "customer-centric" forms/tools
Patients should directly be involved in the design of all forms and tools for data collection. This way, they can easily and effectively send in information about their health conditions. For example, the Karolinska Institutet in Sweden designed all of their tools around the patient, resulting in an excellent user experience.

Build multi-step data verification process
We recommend using multiple checkpoints to make sure data is correct. For example, the Society of Thoracic Surgeons assigned one data manager to support this process, and ensure quality and valid data.