In the internet age there is an unprecedented amount of information available to anyone with access to the web. 

Minda Carter, is a pseudonym and her story has been modified to protect confidentiality. Minda is 8 months pregnant with her first child, and has been receiving prenatal care at an Ontario hospital. She has been very proactive about keeping healthy during pregnancy. One way she has done this is by taking advantage of the hospital’s online personal health record.

A week after her most recent appointment, Minda logged into the personal health record to read the clinical notes and see the results of her routine blood test.  She noticed that the clinical notes did not match what happened during the appointment. The medical resident and Minda had discussed her recent concerns about some numbness in her legs and sore back. The resident confirmed her own online reading that she was experiencing sciatica, or a pinched nerve in the back, a common and often painful side effect of pregnancy. They discussed some options to alleviate the pain, including a referral to a physiotherapist.

However, the clinical notes she read on the personal health record described a visit with a different patient, who was 8 months pregnant with her 3rd child and was dealing with gestational diabetes.  Minda sent an email to her doctor letting him know about the mix up, and provided her description of what was really discussed during the appointment.

Minda’s story is one where the patient is in control – of her own health care and the information related to her care.

What is an ePatient?

A growing number of patients, like Minda, are using web based information to help them navigate through the health care system, better understand their own conditions and inform their interactions with health care providers.

This movement is part of a social shift, enabled by the internet and information age, described as participatory medicine, “in which networked patients shift from being mere passengers to more responsible drivers of their health, and in which providers encourage and value them as full partners.”

These patients have been called ePatients. However, Colleen Young, a founder of the Health Care Social Media Canada online community (#hcsmca), notes that this extends beyond the use of electronic tools. Young notes that the standard definition for ePatients is those who are “empowered, engaged, enabled and experts” in their own health.

Learn more about the ideas behind the ePatient movement by watching a video of leading ePatient, Dave DeBronkart.

Young notes that while this is a growing trend among patients, many providers are not that receptive to ePatients’ demands for a more participatory style of medicine; saying “it’s a very frustrating journey for ePatients if they don’t have an eProvider who encourages and enables a collaborative model of health care.”

Traditionally, health care providers have acted as gatekeepers around health care information and services for their patients.

There has been resistance by some, who are concerned that medical information available online is variable and unreliable, that patients will substitute anecdote-based information for evidence-based doctors’ advice. However, research suggests that accessing online resources and participating in ePatient communities can be beneficial to patients.

A recent study surveying patients who used the online patient forum, patientslikeme.com, found that individuals reported improved understanding of their condition, and reduced use of health care, including inpatient visits. A 2010 study surveying American adults who used an online personal health record found that as a result, patients took further steps to improve their health and ask their doctors questions they would not have previously asked.

There are a growing number of providers who are adapting their practices and organizations to incorporate the needs of ePatients. Increasingly, organizations are using web-based tools, such as online health records and appointment booking systems, to meet the demands of ePatients to participate as partners in their care.

eProviders in Canada

Raphael Sharon, a pediatrician in Edmonton, Alberta, recently introduced a blog , where he describes common pediatric problems, and issues he discusses frequently with patients. Dr. Sharon notes that having evidence-based information available online can help to reinforce the conversations that occur at appointments, and provide support to parents in between.

Jenn Sprung, a Belleville mother of three young children, one of whom has special needs, says that when it comes to understanding the medical issues for her son with special needs “the web enables me to find answers to my questions faster and makes me feel more empowered.”

The local pediatric practice which Sprung and her children use, Quinte Pediatrics and Adolescent Medicine, maintains a blog, and has doctors set up with Twitter, and are supportive of her use of the web to access health information.

However, some doctors have legal and ethical concerns about providing health care information to patients online. If patients act upon information they read on a doctor’s blog without a consultation and they experience a negative outcome, who’s responsible?

Individual organizations, such as hospitals, often have their own social media policies to navigate these legal concerns, and the Canadian Medical Association also has developed guidelines for online communication with patients, which is intended to guide doctor’s behavior in the rapidly changing online environment.

Organizations Providing Tools for ePatients

Some organizations, such as Sunnybrook Health Sciences Centre, are moving beyond providing general health care information to patients online, and are providing tools for patients to manage their own health and access health care information, including clinical notes, online.  MyChart is a web-based tool that provides information including test results and clinical notes from Sunnybrooks’ electronic patient record system.  Patients can also enter their own data to MyChart as well as request appointments, e-message with doctors or clinic administrators and submit medication refill requests.

Sarina Cheng, director of Health Data Resources, Information and Telecommunications at Sunnybrook says that MyChart was developed because “Sunnybrook recognized the need for better patient access to information to manage their personal health.” She says that MyChart is based on the hope that “better access to health information keeps consumers informed and connected to their health and perhaps leads to better outcomes.”

While Cheng notes that there were some concerns from clinicians that “patients knowing this information would lead to anxiety and more frequent calls to clinics” this has not been the case.  Cheng also suggested that concerns doctors would not be honest about sensitive issues in clinical notes because patients could read the notes, has not been a challenge, as there have been processes in place where patients could access paper health records at the organization, and MyChart is simply “creating a more convenient and timely approach” for patients to access their records.

Cheng notes that no data has yet been released about the use of MyChart, its’ impact on patients’ health and outcomes, or on provider satisfaction. This information will be publicly available later this year.

Meeting the needs of ePatients in Today’s Health Care Environment

Health care organizations are increasingly managing competing demands for scarce public dollars, and while programs such as MyChart are providing services for ePatients, there has been little research to evaluate the impact of these tools on patients.

Michael Evans, a Toronto family doctor, and founder of the HealthDesignLab at St. Michael’s Hospital suggests that “we’re just at the beginning” and that while there is “a lot of innovation” around developing online tools for patients, “there is little measurement and evaluation” of these tools.

Evans notes however that “there is a growing demand from patients to have more tools [to manage their health] online” and that with many other aspects of our lives, such as banking, travel and communications “we are using the web for personal contact, which isn’t happening yet in health care, but now patients are expecting it from their health care providers.”

However, there are still very few organizations that provide such tools to patients to help manage their health online. The Ontario government’s Action Plan for Health Care promises to “engage providers to improve care and support Ontarians in taking charge of their own health.” One way to do this would be through online tools championed by ePatients. However, there is no explicit mention of these tools in the Action Plan, and to date Ontario’s approach to this area seems fragmented.