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My Health Counts! Learn More About e-Patient Strategies
Dr. Tom Ferguson, founder of epatients.net, coined the term e-patient to describe individuals who are empowered, engaged, equipped 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 doctors 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?
passive role active (engaged) role
information provided to them seek 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:
* 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 advisor 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. She currently blogs on "Patient's Perspective."
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 read her newspaper columns, or her patient empowerment site at About.com
My Health Counts! Learn More About Peer-to-Peer Healthcare
Peer-to-peer healthcare acknowledges that patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible. The Pew Internet Project has collected the data that proves this as a concept. The Pew Internet Project is a non-profit, non-partisan research organization in Washington, DC which studies the social impact of the internet.
It’s not surprising that when someone gets sick, they grab their phones, they grab their laptops, they grab their loved ones, and they go. They go into that unfamiliar area of a new diagnosis, a new drug, a new treatment. They consult experts. They call and search and text. They band together and share a wealth of information from peers to supplement the wealth of information from specialists.
Just like peer to peer file sharing transformed the music industry by allowing people to share songs, peer-to-peer healthcare has the potential to transform the pursuit of health by allowing people to share what they know.
It is the confluence of two powerful forces:
The bottom line is that the internet does not replace health professionals. Pew Internet’s research consistently shows that doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, but online resources, including advice from peers, are a significant source of health information in the U.S.
Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale. It’s the evolution of internet use that the Pew Internet Project has been tracking in other industries, and it’s just finally having an impact on health care.
As broadband and mobile access spreads, more people have the ability – and increasingly, the habit – of sharing what they are doing or thinking. In health care this translates to people tracking their workout routines, posting reviews of their medical treatments, and raising awareness about certain health conditions.
Pew Internet research shows that one in five internet users have gone online to find others who might have health concerns similar to theirs.
That percentage is even higher – 1 in 4 – among those living with chronic disease, those who are caring for a loved one, and those who have experienced a significant change in their physical health, such as weight loss or gain, pregnancy, or quitting smoking.
All of these groups are also more likely to use social networking sites like Facebook to gather health information and to follow their friends’ health updates on the sites.
The tools are in place. The culture is shifting to expect that people have access to information and each other. There is mounting evidence that connecting patients with each other and with their data can have a positive effect on health outcomes.
But we are still at the early adoption stages.
My Health Counts! Learn More About OpenNotes Study
Inviting patients to read their doctor’s notes, that simple idea is the centerpiece of a year-long trial that was tested in three health centers around the country: Beth Israel Deaconess Medical Center, a teaching hospital in Boston; Geisinger Health System, a rural set of clinics in Danville, PA; and Harborview Medical Center, a safety net hospital in Seattle.
The OpenNotes project set out to answer a basic, but revolutionary question: What happens when we give patients access to the notes their doctors write about them? The answer: Patients become more active partners in their health care. After 12 months of note-sharing, both doctors and patients reported on their experiences. Having easy access to their doctors’ notes helped patients feel more in control of their care. Patients also reported a better understanding of their medical issues, improved recall of their care plan, and being more likely to take their medications as prescribed.
This study involved interventions in the health care systems of Boston, Pennsylvania and Seattle, where primary care physicians in each site were invited to participate in offering OpenNotes to their patients.
With the intervention, patients were given access to their doctors’ notes for one year. Boston and Pennsylvania had preexisting patient internet portals, while Seattle used an experimental portal. Doctors who declined participation, and their patients, made up the comparison group. The authors used interviews and focus groups with doctors and patients to develop pre- and post-intervention surveys, and tracked uses of Internet portals before and during the intervention.
A total of 114 doctors participated in the intervention, along with 22,000 patients who were registered portal users. PCP participation rates varied across the three sites: 19 percent in Pennsylvania; 66 percent in Boston; and 87 percent in Seattle.
The heart of the OpenNotes project is to involve patients far more actively in all aspects of care and to improve communication between the doctor and the patient. It also encourages patients to share information with others, including those who care for them and it may help prevent mistakes.
Within days of seeing their doctors, patients received an e-mail inviting them to read the doctor’s signed note on a secure patient Web site. Two weeks before their return visit, patients received a second e-mail inviting them again to review their doctor’s note from the previous encounter.
After a year, almost all the patients were enthusiastic about the OpenNotes initiative.
Surprisingly, so were the majority of doctors. Approximately three-quarters of all the doctors said that such transparency had none of the dreaded impacts on their practice. Many felt there was more trust, better communication, more shared decision-making and increased patient satisfaction. While a portion of the doctors were hesitant at the beginning of the study, not a single one opted to stop sharing notes with patients after the study ended.
There were several surprising results for patients, as well. While many said they felt more in control of their own care, up to almost 80 percent of the patients said that reading their doctors’ notes helped them to take their medications more regularly and better follow their doctors’ treatment recommendations. Furthermore, having access to their doctors’ notes became so important that nearly all of the patients said any future decisions regarding doctors or hospitals would be predicated on being able to access their records easily.
The study was primarily funded by the Robert Wood Johnson Foundation’s Pioneer Portfolio, with additional funding from the Drane Family Fund and the Florence and Richard Koplow Foundation.
Visit the OpenNotes website
Read e-Patient Dave’s blog about the results of the OpenNotes project
My Health Counts! Engaging With Your Medical Records
Many people want to play a more active role in their health care. The right to see and get a copy of your medical records (called the right to access) is fundamental to your ability to participate in the health care system.
Health information is critical to all patients so that they can track their progress through wellness programs, monitor chronic conditions, communicate with their treatment teams, and adhere to their important treatment plans.
Important tools like Electronic Health Records (EHRs) and Personal Health Records (PHRs) will make it easier, safer, and faster for you to get access to your health information and stay engaged. These tools help you become a true partner in your health care and wellness.
Since 1996, when Congress passed the Health Insurance Portability and Accountability Act, or HIPAA, patients have had the right to read and even amend their own records.
All too often, consumers face barriers to getting their health information – and the first barrier is that many do not know their rights. You should know you have the right to: Ask to see and get a copy of your health records from most doctors, hospitals, and other health care providers such as pharmacies and nursing homes, as well as from your health plan; and Get the copy of your record in the way that you want – such as an electronic copy or a paper copy – if your plan or provider is able to do so.
And those who have attempted to exercise their rights have often found themselves mired in a parallel universe filled with administrative regulations, small-print permission forms, added costs and repeated delays. The Office of the National Coordinator for Health Information Technology (ONC) has many resources to help you learn about engaging with your medical records on their website, HealthIT.gov.
My Health Counts! Treatments and Reducing Risks
Treating Colorectal Cancer
A good medical team is one of the keys to successful colon cancer treatment and recovery. In addition to your primary care physician an oncologist (a doctor who treats cancer) will often act as the coordinator of your care. Your team might include gastroenterologists (doctor who specializes in the digestive system), surgeons, and radiation specialists, pathologists, and psychologists to help patients cope with this new diagnosis.
The type of treatment you medical team recommends will depend largely on the location and the stage of your cancer. The main types of treatment that can be used for colorectal cancer are:
Taking an Active Role In Your Treatment
It’s natural to want to want to learn all you can about your disease and treatment choices. However, sometimes the stress and shock of the diagnosis can be overwhelming. Take notes, bring someone with you, make a list of questions, don’t be afraid to ask for clarification or suggestions for additional resources. Remember you don’t need to ask all you questions at once. You will have other chances to ask your medical team to explain things that are not clear or ask for more details.
Follow these links for in-depth information about treatment for colorectal cancer:
Treatment of Colon and Rectal Cancer from the National Cancer Institute - Learn about colon and rectal cancer symptoms, diagnosis, treatment, and questions to ask the doc.
Colon and Rectum Cancer Detailed Guide from the American Cancer Society with extensive medical details including staging, treatment, tips for talking with your health care team, what happens after treatment and additional resources.
Guide to the Stages of Colon Cancer and Treatment Options from the National Cancer Institute.
Getting a Second Opinion
Before starting treatment you may want to get a second opinion before making a decision about your treatment plan. A second opinion can confirm or suggest modifications to your proposed treatment plan, provide reassurance that you have explored all of your options, and answer any questions you may have. Many insurance companies will cover a second opinion if you or your doctor requests it.
The National Cancer Institute provides a helpful fact sheet called How to Find a Doctor or Treatment Facility If You Have Cancer.
Many choose to incorporate complimentary treatments like acupuncture, massage therapy, herbal products, vitamins or special diets, and meditation into their treatment plan. Be sure to discuss this with your treatment team. Things that seem safe, such as certain herbal teas, may change the way standard treatment works.
You may find it helpful to read the NCI booklet Thinking About Complementary & Alternative Medicine: A guide for people with cancer.
Questions for your doctor about complimentary treatment:
Colon cancer is highly treatable when found early and preventable with regular screenings. If everybody age 50 and over had regular screening tests as many as 60% of deaths from colon cancer could be prevented. Ask your doctor when to begin screening and what tests are right for you. Be sure to mention any personal or family medical history that may put you into a higher risk category.
Keep in mind that screening is important in healthy people that don’t have symptoms.
In addition to undergoing regular screenings, studies suggest that people can reduce their risk of colorectal cancer by eating a diet that reduces consumption of fat and red meat and includes plenty of fruits and vegetables, having a physically active lifestyle, maintaining a healthy weight, limiting alcohol consumption and not smoking.
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