Use of the Nominal Group Technique for health search systems design: An example of health information seeking behaviors of rare disease caretakers

Theoretical Background and research questions/hypothesis:

Human search for information is a constant and instinctual problem-solving behavior. With the rise of the computer, searching has quickly manifested into a ubiquitous digital activity. In some situations, there are information-seeking circumstances where a user’s need for information is of extreme importance, such as seeking urgent medical information. Studying people’s online health information-seeking behavior (OHISB) allows researchers to create guidelines for improving search systems.

This study focused on rare disease caretakers. The NIH defines a rare disease as affecting fewer than 200,000 people. While “rare” infers that these conditions are uncommon, more than 300 million people worldwide are currently diagnosed. Rare diseases are chronic and often life-threatening. Due to rare diseases being “rare,” a lack of medical knowledge is available for patients and their families.

Methods:

For qualitative research investigating OHISB, the Nominal Group Technique (NGT) can be useful. NGT is a focus group that follows steps to produce a consensus of participant responses. Researchers use NGT for establishing priorities within a problem space.

This study reports on a focus group following NGT investigating the OHISB of rare disease caretakers. Participants in NGT are involved in data collection and analysis. They produce a conversation to be analyzed by the researcher and a set of itemized priorities.

Results:

Participants in the focus group discussed the question: From the time of your loved one’s diagnosis until now, what factors have affected your search for health information? The discussion resulted in five major themes: Clinical trials; searching for accurate, understandable medical information; looking for resources such as caregivers, educational topics, dietary questions, governmental resources, etc.; day-to-day life; and looking for information from other families. Additionally, I devised two themes using the grounded theory method: Diagnosis and expert. The themes collected from the focus group provide a rich description of information-searching behaviors of rare disease caretakers.

Conclusions:

These findings paint a picture of the online searching behavior of rare disease caretakers. This information contributes to the knowledge base by focusing on a specific, specialized target user. Rare disease caretakers go through a research process to gather information regarding their loved one’s rare disease. One of the beneficial sources of information is online health communities. Over time, the gathering of information develops them into rare disease experts.

Implications for research and/or practice:

Designers of health information search systems can benefit from these findings. Discovering the main topics of importance to this population allows for site development which prioritizes the search goals of this specialized user. Search sites can offer tools with affordances for people with varying degrees of expertise, allowing for help for the novice user with a limited understanding of medical terminology and offering tools and engagement for those who have reached expert status. Techniques provided by the affordances of emerging technologies, such as machine learning and artificial intelligence, can track the usage of search sites to respond to the user's needs in real-time. This is new ground for discovery within the design process.