This project focuses on improving Shared Decision Making for people with Familial Hypercholesterolaemia (FH). FH is a metabolic disorder that causes the cholesterol levels in the blood to rise, increasing risk for developing cardiovascular diseases (CVD) at a young age. Therefore, daily medication (statins) is prescribed to lower the patient’s cholesterol level.

 

Literature research revealed that the effect of statins on the individual cannot be predicted. Therefore, treating FH and finding the ‘right’ medication is often a trial and error process.

An explorative user study was conducted including semi-structured interviews, consultation observations and an analysis of the posts on the FH patient Facebook page to create an experience journey. It showed that the physician is in the lead during the consultation, has full access to the patient’s medical data, bases the decisions about medication primarily on the cholesterol outcomes and is limited in time to question for example quality of life. In general, FH patients are reactive, have a limited understanding of the blood results, and have limited access to their own medical data. This makes it hard for them to take on an active role in decision-making. In addition, discussions may occur between the patient and physician about the side effects of the medication. 

 

MIK

MIK was developed as a result of the design process, a digital (stand alone) application that gives physicians and FH patients a more equal way of communicating through shared information and decision-making. The application lets the patient prepare for the consultation by filling in short questions regarding lifestyle factors, their values, and their treatment preferences. During the consultation MIK serves as a supportive communication tool by giving easy to understand graphics of the medication options and cholesterol results. The application will be available on computer, tablet and phone.

It triggers the patient to have an active role and makes implicit information regarding treatment preferences and values explicit. Next to this, it provides information leads enabling the physician to tailor individual (treatment) advice.  

 

MIK was tested with a number of physicians as well as FH patients using an interactive prototype on a tablet in a role-play simulation of a consultation. First responses about MIK were positive. In particular, on the psychological (FH patients) and efficiency (physicians) effect it could have on the consultation. However, more research is needed in the practical integration of the application in the current care system of hospitals.