Michele Visciola on online healthcare information

Michele Visciola, Experientia partner, gave a talk this week on online healthcare information at the 16th IFHRO (International Federation of Health Records Organizations) Congress in Milan, Italy.

The International Federation of Health Records Organizations (IFHRO) serves as a forum for the exchange of information relating to health records, education of medical record personnel, and information technology.

The talk, entitled “Online healthcare information: where is the divide between a trustable and an untrustable information and communication system?”, highlighted how a user-centred approach can be used to provide healthcare information that meets user needs.

Here is the executive summary of his talk:

How and what kind of information is provided by online healthcare services is critical to designing a user-centred system that meets user needs, and does not put individuals’ health at risk. The move of healthcare information to the online world has raised some serious concerns in terms of content and the ways in which the information is used. The paradigm shift from personal consultation with a trusted family doctor to inquiries made to an anonymous or general online source has created a context of self-diagnosis from online information, leading to potential health disasters. The open access to information that was previously the privilege of medical practitioners has created a situation in which the patient’s desire for immediate information conflicts with the need for professional advice.

This research project benchmarked 41 websites, within Italy and internationally, to understand how a user-centred approach can be used to provide healthcare information that meets user needs. The project focused in particular on the needs of patients, and their family and friends.

The healthcare information needs of patients can be grouped into Knowledge, Action and Sharing. “Knowledge” is the inherent information the patient needs about her/his health, such as details on the illness, prevention, care, the health structure, ethics and rights, and well-being. This can be either “cold” information (top-down) or “warm” (bottom-up or horizontal). “Action” includes the reactive and proactive behaviors that the patient can take, while “Sharing” is the exchange of information, experience and emotions with people in similar situations.

The 41 websites explored were selected as best practice in the field, and the ways in which they supported the above classification of user needs was considered. For each of the three areas described above, we identified the ways in which patients’ information requirements were met (or not) by the sites.

When comparing Italian sites to the international sites, we found that the international sites were more developed in terms of interactive and personalization solutions. Within Italy, the least developed areas are Action and Sharing, which are the most complex categories and play a fundamental role in the patient’s world. The “cold” top-down information was the most complete and organized, while there was little space dedicated to horizontal communication. The Italian sites tended to present one-way, pre-packaged communication that focused on “useful” information, but ignored “emotional” aspects. Regardless of the local cultural dimensions that are not considered in this study, we recommend that online healthcare information should focus on improving the following at the 3 identified levels: “Knowledge”: provide real possibilities for knowledge through presentations and memos. “Action”: Give people the chance to participate in assessing what they need to do. “Sharing”: Provide instruments for sharing and discussion.