When you have a health problem, there’s a story that only you — not your doctor or family — can tell.

Hearing about the experiences of people with the same illness as yours — how they first noticed changes in their health, how they felt when they were diagnosed, and how they confronted their fears and went through treatment — can be profoundly empowering and encouraging, not to mention educational.

A group of Japanese researchers has published such first person accounts of patient experiences online, a project modeled after the Britain-born Database of Individual Patients’ Experiences (DIPEx).

Dr. Ann McPherson, an Oxford general practitioner, along with clinical pharmacologist Dr. Andrew Herxheimer, came up with the concept for the database in 2001 after experiencing illnesses themselves. Now called healthtalk.org, the British database covers nearly 100 different health and illness issues.

Inspired by the movement, the Japanese researchers, made up of mostly doctors, nurses and sociologists, launched DIPEx-Japan in 2007. They have adopted the DIPEx methodology of collecting, analyzing and publicizing patient data and have received training from the group in Britain.

The Japanese nonprofit has covered five issues so far: breast cancer, prostate cancer, dementia, bowel screening and clinical trials. Each issue features 35 to 50 interviews.

Rika Sakuma Sato, managing director of DIPEx-Japan, recently discussed the dementia section of the site at a gathering of dentists and other medical professionals in Tokyo. The section, released in 2013, includes interviews with 12 people with the illness and 35 family members.

The section features 29 topics, such as how symptoms started and how patients sought consultations at hospitals. In addition to treatment experiences, patients and families talk about joining support groups, settling in care homes, juggling work and treatment, and the struggle to pay medical bills.

Dementia is already a major concern in rapidly aging Japan, with the health ministry projecting the number of people with the condition to swell to 7 million in 2025.

Still, fresh insight can be gained by watching people unload their feelings and experiences on camera. Their names are not disclosed, but some personal details, such as their age at the time of the interview, the kind of treatment they received and their family background, are made public.

One man in his mid-60s was diagnosed with early onset Alzheimer’s when he was 59. The former neurosurgeon said he first noticed something was wrong in his early 50s when he started having difficulty writing easy kanji.

“When I first noticed something strange is … um, well, what was it?” he says in a video, pausing and stuttering as he tries to utter the word ji (character). “I could not write characters.”

In contrast, another interviewee, a woman in her 50s, is perfectly articulate as she recounts her experience suffering visual hallucinations. Hallucination is a common symptom of Lewy body dementia, a rarer type of the illness that often doesn’t accompany memory impairment in early stages common in dementia.

“I read everywhere that people with Lewy body dementia suffer from visual hallucinations when their health conditions decline. But in my case, it happens when I’m in a normal state of mind and have the normal ability to think, like right now,” she said in a video. “So for example, when I’m reading a newspaper editorial in the morning, I see a bug fly by me.

“If I saw a stranger in my house, I’d understand I’m hallucinating, though it would still surprise me. I’d reason that, since there’s no possibility of a stranger being here, it should be a hallucination. So I think hard (when I see things). … But when I stare at the bug and think hard about what it is, I still can’t figure it out. It looks real. Then it suddenly disappears and I realize it was a hallucination.”

Sato said DIPEx-Japan interviewers visit the homes of patients and let them talk freely for about two hours. Only about 15 minutes of each interview are published online. But the full visual, audio and text data are made available for researchers.

The database can also be useful for medical education, Sato said.

“Not only does the site give opportunities for ‘junior’ patients or their family members to learn from ‘senior’ patients, but also it shows friends and co-workers a way to understand what’s happening to people around them,” she said. “We want the data to be used for medical students so they can learn how to offer holistic, patient-centered care. Moreover, we want interview data to be used for academic research and patient experiences to be established as a field of study so more of their perspectives will be reflected in health care policy.”

DIPEx-Japan, which uses public research funds and donations but refuses financial support from parties with links to pharmaceutical companies and medical equipment manufacturers, is now working on a database of people with chronic pain.

It will also host a symposium next month in Tokyo on clinical trials based on its data, released last November, of 40 people who participated in, turned down or were rejected from trials.

A Matter of Health is a weekly series on the latest health research, technology or policy issue in Japan. It appears on Thursdays.

In a time of both misinformation and too much information, quality journalism is more crucial than ever.
By subscribing, you can help us get the story right.