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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.
My Health Counts! Symptoms and Screening Tests
Symptoms of Colorectal Cancer
Colorectal cancer, especially in its early stage (when it is easiest to treat and the prognosis is best) often does not produce noticeable symptoms.
Usually early colorectal cancer does not cause pain. It is important to not wait to feel pain before seeing a doctor.
Keep in mind other health problems can cause similar symptoms. Most often, these symptoms are not due to cancer. Anyone experiencing these symptoms should see a doctor to be diagnosed and treated as early as possible. It’s important to share any symptoms with your doctor.
Screening and Tests for Colorectal Cancer
We have a unique opportunity with screening. Screening tests help your doctor find polyps or cancer before you have symptoms. Finding and removing polyps may prevent colorectal cancer. Also, treatment for colorectal cancer is more likely to be effective when the disease is found early.
Regular screening for colorectal cancer should begin at age 50 for people at average risk.
People who are at higher-than-average risk of colorectal cancer should talk with their doctor about whether to have screening tests before age 50, what tests to have, the benefits and risks of each test, and how often to schedule appointments.
Screening Saves Lives! Colorectal Cancer can be prevented. Regular screening can find precancerous polyps so they can be removed before they turn into cancer. Screening can find colorectal cancer early, when treatment can be very effective.
Screening Tests include:
High-Sensitivity FOBT-(stool test)
Sometimes cancers or polyps bleed. This test can detect tiny amounts of blood in the stool. You receive a test kit from our health care provider. At home, you obtain a small amount of stool and return the test to your doctor or lab, where stool samples are checked for blood. If this test detects blood, other tests are needed to find the source of the blood.
How often: Once a year
Your doctor checks inside your rectum and the lower 1/3rd of the colon for polyps or cancer with a lighted tube called a sigmoidoscope.
How often: Every five years
This is similar to the flexible sigmoidoscopy, except the doctor uses a longer, thin flexible tube to check for polyps or cancer inside the rectum and the entire colon. During the test, the doctor can find and remove most polyps and some cancers. Colonoscopy also is used as a follow-up test if anything unusual is found during one of the other screening tests.
How often: Every 10 years
Double Contrast Barium Enema
You receive an enema with a liquid called barium, followed by an air enema. The barium and air create an outline around your colon, allowing the doctor to see an outline of your colon on the computer screen.
“Virtual Colonoscopy” CAT Scan
This test uses x-rays and computers to produce images of the entire colon. It requires the same preparation as a colonoscopy.
There are many screening options available—each with its own benefits and drawbacks. The U.S. Preventative Services Task Force recommends colorectal cancer screening for men and women age 50-75 using FOBT, sigmoidoscopy or colonoscopy. Talk about your options you’re your doctor and together you can decide which test is appropriate for you.
The CDC launched the Colorectal Cancer Control Program (CRCCP) by providing funding to 26 states and tribes across the United States. The program supports population-based screening efforts and provides colorectal cancer screening services to low-income men and women aged 50–64 years who are underinsured or uninsured for screening, when no other insurance is available. In addition to colorectal cancer screening, the program sites also provide diagnostic follow-up.
Find out more about New York State's Cancer Services Program here or by calling 1-866-442-2262.
Colorectal Cancer Screening Tests
Information on colorectal cancer screening form the Center for Disease Control and Prevention. Also see Colorectal Cancer Screening Basic Fact Sheet, Screening Saves Lives Brochure
Colorectal Cancer Screening: Questions and Answers
Fact sheet from the National Cancer Institute. Includes a table that outlines the advantages and disadvantages of colorectal cancer screening test.
My Health Counts! Risk Factors for Colorectal Cancer
75% of Colorectal Cancers occur in people with no known risk factors. There is strong scientific evidence that having regular screening tests beginning at age 50 reduces deaths from colorectal cancer. Screening tests can find precancerous polyps (abnormal growths) in the colon and rectum, and remove them before they turn into cancer.
Who’s at risk? Everyone. On average 1 in 11 people will be diagnosed with colon cancer.
Some factors increase your risk for colorectal cancer including:
If you are in a higher risk category you may need earlier or more frequent tests than people who are at average risk. Talk to your doctor about when to begin screening, which screening test is right for you and how often you should be tested.
The National Institute of Health developed an online colorectal cancer risk assessment tool for people over 50. Take the online assessment by visiting www.Cancer.gov/ColorectalCancerRisk.
The two most important things you can do to reduce your risk for colorectal cancer are to get screened and follow your doctor’s recommendations for follow-up. Talk to your doctor about which screening test is right for you.
American Cancer Society - Information and resources for colon and rectal cancer including a look at risk factors.
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