Researchers had told us they had problems in finding evidence about patient experiences. Therefore, we worked closely with the Research Team and patients to produce a resource which fitted in with how patient experiences are studied using systematic and robust methods. Our Team interviewed 40 people with ME, and we wanted to make data containing their experiences available in full on the website.
Qualitative research does not usually make its entire data set publicly available in this way, so we built a software tool to import the data from the their analytical software (NUD*IST) and established a search interface to it on the web site. The interface was prototyped several times to ensure that it worked for our audience.
Ethical concerns meant that we had to ensure that the anonymity of interviewees (and any individuals they might have identified in their interviews) was preserved at all times. We worked closely with the interviewees, researchers and project managers to establish a rigorous process for anonymising and checking the data without distorting the original experiences.
Finally, we created a system for searching the database that allows researchers to read valid patient experiences about specific topics (e.g. Coping Strategies) at the click of a button.
Site Design
In developing the site design, we continuously consulted people with ME/CFS to find out how to make it easy for them to use. Amongst their recommendations were:
- muted, darker colours were better
- font must be 14 point or bigger
- paragraphs must be very short
The PRIME Patient Experience Database was launched on 17th March 2006.
