Helping patients deal with information overload

Today more and more patients are opting for home care and searching for alternative sources of information about how to best care for themselves. But in this information age, they often find conflicting messages and can get lost in the information overload.

To help solve this problem, researchers in the Health Evidence Application and Linkage Network (HEALNet), funded through the federal Networks of Centres of Excellence program, are designing ways to help patients access the information they need, and take a more proactive role in their own care.

They have designed, and are now testing, a system that will help diabetes patients access and interpret information specific to their conditions. They are also trying to determine how patients use the advice doctors give them and they may soon get patients to create their own guidelines for care.

"In de-institutionalizing health care, we need better support and information systems for those people at home so they won't feel lost and abandoned," says Dr. Brian Haynes, professor of clinical epidemiology and medicine at McMaster University.

Dr. Haynes has created an easy-to-use searchable database of information about diabetes treatments. He and his research team choose the information, which is based on sound scientific evidence from sources around the world, then compile it into an up-to-date, attractively packaged format. They write short abstracts of important journal articles using language the general public can understand.

They have also developed a new way to collect patient data through a health quiz questionnaire that patients can answer by touchtone telephone. A computer system records their answers then matches the patient's condition to current guidelines and treatments. It then reports the most recent detailed care recommendations, one report tailor-made for the patient, another for his or her doctor.

Diabetes affects 1.5 million Canadians and Dr. Haynes estimates that roughly 17 per cent of health care resources are devoted to the treatment and care of people with diabetes.

"In the longer term, we hope these programs will reduce the cost of care and the need for hospitalization, thereby reducing the strain on our health care system," says Dr. Haynes. "But the main thing is that we are trying to make sure that people get the best treatments and care available to treat a painful and often debilitating chronic disease."

Dr. Haynes says the potential for this HEALNet technology is tremendous. Though they are currently using it to gather diabetes information, he says this is a model that will be used for other chronic diseases like kidney failure, asthma, hypertension, and heart disease.

And the information system will also help doctors deal with overload. Dr. Haynes says there is often a 20-year lag from the time there is strong evidence a treatment works to the time doctors recommend it widely. This is because doctors often don't have the time or resources to keep up with the mountains of studies being released all the time. But with a simple and accessible information database, doctors will know what the latest pertinent research is without having to spend hours in a library and patients will even be able to suggest treatments to their doctors.

This idea of getting patients more involved in decisions about their own health care is something some health professionals have been reluctant to do in the past.

"Traditionally, we as health professionals have assumed that we know best," says Dr. Alex Jadad, assistant professor in the department of clinical epidemiology at McMaster University. "But now we want to empower patients to be more critical of the suggestions and information they receive, so we are working as a team with them, as co-investigators."

Dr. Jadad and other HEALNet researchers from across the country are producing manuals to help patients and other health care consumers interpret clinical practice guidelines.

"At the end of the day, patients may have a perfect guideline, but may rely more on what a relative or neighbour tells them," says Dr. Jadad. "It's important for us to know how people use the information we give them. Do patients actually take better care of themselves when they have the best evidence-based guidelines available?"

Dr. Jadad's team has also prepared a questionnaire they will give to patients in hospital. The patients will use the questionnaire to evaluate how good or appropriate they think the care guidelines they were given by the hospital really are. Later, they hope to get patients to help produce their own guidelines for care.

Dr. Jadad says the process should leave consumers more informed and more satisfied with the health care system and the care they are receiving. He says it should also lead to a more efficient use of resources, since patients who are involved in deciding how they will be treated may shop around less and seek fewer second opinions.

HEALNet researchers are now looking for industry partners to help them take this work further. Researchers hope their program will be commercialized in the future and they see a great potential for its sale in international markets.

Overall, the NCE funds going to HEALNet help finance 51 projects and result in an average annual research and development investment of $2,150,000. The NCE program is jointly funded by three granting councils: the Natural Sciences and Engineering Research Council, the Social Sciences and Humanities Research Council, and the Medical Research Council. HEALNet consists of more than 100 researchers from over 20 prestigious research institutions across Canada.

For additional information please visit the HEALNet Web site.