My Health Counts! e-Patients

Learn More About e-Patient Strategies 

Dr. Tom Ferguson, founder of epatients.net, coined the term e-patient to describe individuals who are empoweredengagedequipped and enabled in their health and healthcare decisions.

“We who’ve become e-patients don’t wait for our providers to tell us everything,” Says e-Patient Dave deBronkart. “We get it in gear, we ask questions and we do what we can to help.”

E-patients routinely turn to the internet when a medical need arises. They use it to prepare and follow-up on doctor’s visits. They use online health resources to supplement and double-check information and guidance their doctors are able offer within the constraints of the typical time-pressured doctor-patient encounter. They go online to explore treatment options their doctors did not mention, to double-check their diagnoses, to learn about complementary treatments, to compare the treatments their doctors suggest with those recommended by other patients at other treatment centers, and to compare their current doctor with other providers.

 

How do patients differ from e-patients?

Patient                                                           e-Patient

passive role                                                   active (engaged) role

information provided to them                   seeks out information (on the internet)

top down delivery of healthcare                partner in healthcare

paternalistic medicine                                 participatory medicine 

 

Recognize e-patient activities

1) e-Patients Research Their Condition & Search for Health Information

Seventy-three million American adults currently use the Internet to look for information on their health concerns. Four out of five of their online sessions begin with a search engine. Patients give themselves online crash courses on their newly-diagnosed diseases and disorders. They prepare for doctors' appointments, and look up information on the drugs and other treatments that their doctors recommend. They look for new ways to control their weight. But above all, they search for information that might help others. According to a recent Pew Internet & American Life survey, more e-patients search for medical information for friends and family members (81%) than for themselves (58%). E-patients use the internet as a resource, studying up on their own diseases (and those of their friends and loved ones), finding better treatment centers and insisting on better care and increasingly serving as important collaborators and advisors for their health care team.

2) e-Patients Connect with Patient Peers

Many e-patients, especially those facing serious medical challenges participate in online support communities for their condition. These online groups, each devoted to a single medical topic (e.g., breast cancer or depression), usually communicate via postings on Web-based forums or electronic mailing lists. Participants share their thoughts, feelings, and experiences, and ask and reply to questions. Group members share their personal stories and experiences. They also exchange information on medical studies and clinical trials, discuss current treatment options, recommend treatment centers and professionals with special expertise in the shared condition and provide emotional support. The members of some Internet support communities organize themselves into online work groups, reviewing the medical literature on their disorder and providing lists of Frequently Asked Questions (FAQs) for the newly diagnosed. Some online support groups conduct informal research on their shared concerns. And a few have developed and carried out their own formal research studies-or have partnered with professional researchers to conduct medical research, with group members serving as research subjects.

3) e-Patients Read and Share Health Data Online

E-patients actively engage with their medical records, keeping track of everything from test results to diagnosis and doctor’s visits. Then they reach out to those they know and love, reporting on their health problems and concerns, and seeking information, advice, and support from their personal network of friends and family members. They refer e-patients to "second-level" contacts, e.g., another friend who knows about their concern. Friends and family members who have some medical background and knowledge are especially helpful.

 

4) e-Patients Create Their Own Support Network

Many e-patients find important emotional support through online communities. People facing a serious medical condition often find it difficult and time consuming to communicate with family and friends.  Online sites like Caring Bridge allow patients to create a personal, protected site where they can connect, share news and receive support during a health event.

Emerging e-patient activities:

  • 47% of adults have used the internet to get information about doctors or other health professionals
  • 41% have read someone else’s commentary or experience about health or medical issues on an online news group or blog
  • 38% have gotten information about hospitals
  • 33% have gotten information about how to lose or control their weight
  • 27% have gotten information about health insurance
  • 24% have consulted rankings or reviews online of hospitals
  • 12% have gotten information about how to stay healthy on an overseas trip
  • 24% have consulted rankings or reviews of doctors 19% have signed up to receive updates about health or medical issues
  • 13% have listened to a podcast about health or medical issues
  • 5% have reviewed a doctor
  • 4% have reviewed a hospital

* Data extracted from the Pew Internet and Life Project Report

Technology is rapidly changing the landscape of health and healthcare.

Increased access to the internet at home and on portable devices from tablets to smart phones has given people access to information and each other in ways never before imagined.

Today an increasing number of people use online resources, including social networks, as significant sources of health information. The revolution in health information is having a profound impact on how patients and physicians interact.

The following reports chronicle the growing online health care revolution--

Mobile Health 2012 (November 8, 2012): Smartphones expand Internet access and enable software applications, key functionalities that give consumers access to health information wherever and whenever they need it.

Family Caregivers Online (July 12, 2012): This report finds that eight in ten caregivers (79%) have access to the Internet. Of these, 88% look online for health information, outpacing other Internet users on every surveyed health topic.

The Social Life of Health Information, 2011 (May 12, 2011): The Internet has changed people's relationships with information. This report shows that online resources, including advice from peers, are a significant source of health information in the United States.

Peer-to-peer Healthcare (February 28, 2011): Many Americans turn to friends and family for support and advice when they have a health problem. This report shows how people's networks are expanding to include online peers, particularly in the crucible of rare disease.

Health Topics (February 1, 2011): Symptoms and treatments continue to dominate Internet users' health searches. Food safety, drug safety, and pregnancy information are among eight new topics explored in this report.

Chronic Disease and the Internet (March 24, 2010): US adults living with chronic disease are significantly less likely than healthy adults to have access to the Internet (62% vs. 81%). However, this report reveals that once online, having a chronic disease increases the probability that an individual will take advantage of social media to share what they know and learn from their peers

Meet some e-Patients

e-Patient Dave deBronkart (@ePatientDave): Dave  A high tech executive and online community leader for many years, Dave was diagnosed in 2007 with Stage IV kidney cancer, with median survival 24 weeks. He used the internet every way possible to partner with his care team; today he is well and has become a leading spokesperson for the e-patient movement. Read his healthcare blog “The New Life of e-Patient Dave”. He also blogs for the Society for Participatory Medicine at e-patients.net.

 

Lygeia Ricciardi (@Lygeia): Ricciardi helped her newborn daughter--who was born with a hole in her heart--avoid a life-threatening surgery by using all of the IT tools at her disposal and being a fully engaged parent. She serves as a senior policy adviser for consumer e-health at the Office of the National Coordinator for Health IT (ONC), and also is the founder of Clear-Voice Consulting, which focuses on improving healthcare through technology from a consumer point of view.

 

Regina Holliday (@ReginaHolliday): After a series of hospitalizations, Holliday's husband Frederick passed away due to kidney cancer in 2009. Since then, through Twitter and her medical advocacy blog, Holliday pushes for patients to be as active as possible in their own care and the care of their loved ones. She also pushes for clarity and transparency in medical records, particularly through her renowned series of murals. Holliday began the patient advocacy movement known as "The Walking Gallery," in which people from all walks of life wear patient-centered care paintings on the back of business suits, jackets and other attire.

 

Virna Elly (@VirnaElly): Elly, who was diagnosed with type 1 diabetes at the age of 8, refers to herself as a professional patient.

 

Kari Ulrich (@FMDGirl): Ulrich, who in April 2007 was diagnosed with brain aneurysms and a rare vascular disease known as fibromuscular dysplasia (FMD), also preaches the benefits of SPM. Ulrich, a registered nurse, also runs the Fibromuscular Dysplasia blog.

 

Donna Cryer (@DCPatient): After a liver transplant due to autoimmune conditions, Cryer experienced all of the highs and lows that the healthcare system has to offer. Now, Cryer serves as a patient advocate through her company, CryerHealth, which promotes the premise that patients should drive their own healthcare.

 

Trisha Torrey (@TrishaTorrey): Told she had a rare and aggressive lymphoma and had only months to live without chemo, she instead used her wits and chutzpah to prove the two confirming reviews of her biopsy were — wrong. Today Trisha is “Every Patients Advocate”-- a spokesperson for patient advocacy and patient empowerment. You can visit her patient empowerment site, Every Patient’s Advocate.