Technology for Rare Diseases in the Rare World

We look into design options for persons with uncommon disorders that haven’t been thoroughly studied or have fewer populations to deal with in this study. Even though a person’s sickness is rare, the number of persons living with a rare disease is significant. Participants found it challenging to communicate about their sickness with friends, family, and Public healthcare providers, and the participants saw their illness as a big part of who they were.

Introduction

Diabetes (e.g. renal disease), cancer, and asthma are common chronic illnesses that affect a substantial and rising portion of our society. Researchers reacted by developing technologies that target the symptoms, causes, and treatment of chronic diseases. These chronic diseases have been extensively researched in the medical literature and have a limited range of symptoms and therapies that may be addressed using technology. As a result, the technologies are tailored to a particular chronic ailment. The scientific community has yet to discover a sweet spot for intervention that will work for every demography and condition. Rare illnesses are kept out of the health design realm because there is no one-size-fits-all solution.

Our objective was to look into the lives of people who suffer from uncommon diseases and find common concerns that may be solved via design. The following are the primary contributions:

1. a profile of persons with rare diseases;

2. a discussion of the similarities and contrasts between rare diseases and more prevalent chronic illnesses; and

3. how technology may address some of these design possibilities.

Rare diseases

Each country has its definition of uncommon illnesses. Rare illnesses affect fewer than 200,000 persons in the United States (or 0.06 % of the population). In much of Europe, just 5 persons out of 10,000 are affected by a rare disease (or 0.05 % of the population). An uncommon illness affects ten percent of the world’s population of around 350 million individuals. There are over 7,000 distinct types of strange illnesses. We used the NIH’s list of uncommon diseases2 to narrow our scope to keep things simple. Rare illnesses can be difficult to diagnose; on average, patients get 2–3 misdiagnoses over five years in the UK and seven years in the US before receiving the right diagnosis. Diagnosis necessitates many visits to primary care providers.

Social Support & Online Communities

Various studies have shown how persons with common chronic conditions use internet groups. These online health communities are often disease-specific and distinct from current social media platforms like Facebook and Twitter. People consider social media sites such as Facebook to be overly public, and thus they don’t utilize them to discuss health information. According to research published on Facebook and Twitter, people are cautious about using private messaging capabilities to discuss health information because they are scared they would be publicly visible or do not know how to make secret messages. Private Facebook groups were proven to provide support to new moms effectively.

Patient-Centred Information Management

Living with a chronic illness necessitates much data management; persons with chronic diseases frequently maintain track of their medical records, gather their notes and data, and even collect articles about their condition. Given patients’ vast data, methods to manage health data that put the patient at the center of the repository are urgently needed.

Findings

The participants’ illnesses affected every area of their life, and having a rare ailment put them in an unusual situation. “Rare World,” S13 summarizes the experience. It’s quite challenging. The receptionist doesn’t get it, and neither does the doctor. Nobody has ever heard of it. It’s a strange situation to be in.” In this section, we’ll talk about the obstacles participants experienced in these different facets of their lives and their techniques to solve them.

Conclusion

The HCI community looks into a rare world where people with rare chronic diseases must fulfil various tasks, including education, advocacy, and assistance for others in their immediate and more significant communities. People who suffer from uncommon, chronic diseases are concerned about their illness’s impact on their caregivers, and they must continually educate, advocate for, and investigate their sickness to communicate with those worried about their disease and treatment properly.

References

1. Ballegaard, S., Hansen, T., and Kyng, M. Healthcare in everyday life: designing healthcare services for daily life. In CHI 2008 (2008), 1807–1816. Google ScholarDigital Library

2. Belluz, J. The truth about the ice bucket challenge: Viral memes shouldn’t dictate our charitable giving, 2014.Google Scholar

Bodenheimer, T., Lorig, K., Holman, H., and Grumbach, K. Patient self-management of chronic disease in primary care. JAMA 288, 19 (2002), 2469–2475.Google Scholar