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OpenNotes: Doctors, Patients and Caregivers on the Same Page

Posted By Liz Salmi, Wednesday, July 19, 2017
Updated: Wednesday, July 19, 2017

After dating me for only 18 months, my now husband became my health care partner. I was 29. He was 31.

In mid-2008, I suffered a massive seizure, landed in the ER, and a scan revealed I had a mass in my brain. Brett suddenly found himself in love with a 29-year-old gal with brain cancer.

After my first hospitalization, Brett jumped into caregiver mode. If I needed clothes for the hospital, Brett packed the bag. When a nurse missed one last stitch in my scalp, Brett finished the job with tweezers. When I needed help coordinating a complex regimen of medications, Brett designed a color-coded spreadsheet that matched my giant pillbox organized by days of the week and times in the day.

Meanwhile, I jumped on the Internet to research treatment options on PubMed, joined Facebook Groups and Twitter communities for people with brain tumors, and started blogging about my experience for family and friends.

There is no right way to respond to illness. My way was to respond with curiosity. I cared about understanding the how and why of my diagnosis and the what of my treatment. Brett’s way was to respond with unconditional love and support. And he cared about taking care of me.

But there is one thing we both needed and continue to need to be active and engaged participants in my care: access to the details of my ongoing care plan—information that is a part of my medical record and embedded in my doctor’s notes.

Brett and I didn’t even know notes were a thing until earlier this year when a change in health insurance forced me to uproot my care from one health system to another. While in the process of collecting my medical records I stumbled across a large PDF document that revealed an insider’s view of my last eight years of living with brain cancer—my notes.

Doctor’s notes (or visit notes, progress notes, clinical notes) are the most important information in our record. This information is readily available to doctors and other members of the health care team to remind them about a patient’s condition and plan for care.

I received great care from my previous health system, but like 96 percent of Americans, my clinical notes were not shared through the online patient portal. This made me wonder… why hide my notes?

I want this to change—for me, for my husband, and for every patient facing a health challenge or working to stay well. 

OpenNotes is a national movement encouraging doctors, nurses, and other health professionals to share the notes they write with the patients they care for using secure, patient portals, with the ultimate goal of improving the quality and safety of care. Shared notes enhance the patient experience by improving communication and trust, and reading notes helps to empower patients to make more informed decisions.

Access to notes can help caregivers like Brett, too. In a 2016 study*, patients and care partners with access to open notes stated that they had better agreement about treatment plans and more productive discussions about their care, and patients were more confident in their ability to manage their health and felt better prepared for office visits. Even better, care partners reported improved communication with patients’ providers at follow-up.

In less than five years, the OpenNotes movement has grown access to notes from 20,000 to over 15 million people. That number is impressive, but it represents just 4 percent of the U.S. population.

When I, the patient, don’t have access to notes, neither does Brett—the person most invested in my care. I spend about two hours each year with my health care team, and over 5,000 waking hours in self-care or “Brett-care.” Access to my notes could help us remember what we need to do between now and the next appointment with my doctor.

So what’s the hold up? Why don’t more people have access to their full medical record and clinical notes?

Doctors and health systems claim people will not understand their notes, or be afraid of what is written in them. This makes no sense to me. I am already looking for information about my diagnosis on the Internet—shouldn’t my first search be based on information in my own medical record?

My husband and I are the most invested people in my care, and the notes are about me. Any information about my health and health care is important to us, and we want to know about it. We can handle it.

* Wolff J, Darer JD, Berger A, et al. Inviting patients and care partners to read doctor’s notes: OpenNotes and shared access to electronic medical records. J Am Med Inform Assoc (2017) 24 (e1): e166-e172.

Liz Salmi is the Senior Multimedia Communications Manager for OpenNotes. OpenNotes is a foundation-funded national movement advocating for clinicians to share their visit notes with patients via patient portals. She is also a patient who does not have access to her notes.



To hear more from Liz and about OpenNotes, join us August 29th for the upcoming webinar, The Power of Knowing. You will learn more about the OpenNotes movement and how your health system can participate, and hear from a doctor and a patient about their personal experiences with notes and transparency. 

Tags:  caregiver  notes  Patient Experience  transparency 

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Finding the Right Fit for Mom: A Daughter's Journey

Posted By Chari Tager, Tuesday, September 6, 2016

This was the situation for my family in 2014:

My mother, Ruth, 82, was in a nursing home in Boynton Beach, Florida. She had moved there after starting to show signs of mild dementia and the beginnings of Parkinson's. My father, Edward, 85, who still lived in their home, visited her every single day, checking up on her care and bringing her meals… and love.

After a year of this routine, which followed several years during which Dad cared for Mom at home, my father was physically worn out. After much discussion, my father, my sisters and I agreed that he should scale back. He moved into a senior independent living residence in Boca Raton, a wonderful place with lots of people for him to interact with. He no longer had to come home to an empty house, he had lots of friends, the staff prepared meals the way he liked and, if he needed it, a car was available. He was so happy, and it felt good knowing he was so well taken care of.

With my father no longer able to keep an eagle eye on my mother, and my parents now in separate facilities 40 minutes apart, my sisters and I decided to see if we could move our mother into the nursing home attached to my father’s facility. Well, we found a place for her there… after waiting almost nine months. She moved in in December, but just a little over two months later, in February 2015, my father passed away unexpectedly.

After consulting with Mom, my sisters and I decided to move her back to New York, where we had grown up and where two of us live. It was a big decision—my parents had spent 27 years in Florida—but my mother was OK with it.

Of course before we could move her, we had to apply for New York State Medicaid. Even though my mother had Medicaid in Florida, the process of getting Medicaid in New York was long and arduous.

Still, the biggest challenge was to find the right place for Mom to live. Unlike Florida, which has lots of nursing homes to choose from, Manhattan has few options. Frankly, the pickings are slim and it was very hard to find a place that we liked and where we thought Mom would be comfortable.

At some point we learned about the Small Houses, the Green House™-based small-groups homes on the Westchester campus of The New Jewish Home. While Westchester is not as convenient for my family as Manhattan, we decided to visit and were so impressed. Of course, as with everything else associated with this transition, getting my mother into one of the three Small Houses was not straightforward. There was the predictable waiting list, which we put her on, and hoped for the best while we continued to expand our search to areas outside but near Manhattan.

After months of searching and of working with lawyers, doctors and bankers to get all of Mom’s paperwork in order, my sisters and I were becoming desperate. Almost panicked, I put in another call to the Admissions office at The New Jewish Home. As luck would have it, a space had become available.

My family was so relieved, but not just because we had finally found a home—a wonderful home—for Mom. We were relieved because there was simply no comparison between the other places we had visited and The New Jewish Home, both in terms of the way the staff treated us—their “customer service,” you might say—and the Small House philosophy. Everything about the experience was comforting and supportive and easy. Even the application was more user-friendly and less intimidating than the ones we got from some of the other places.

As for the Small House where my mother now lives, it is amazing! My mother is a big fish in little pond, and she’s tickled pink. She does ceramics, which she never would have tried before. She looks forward to music therapy, in which she participates wholeheartedly. Most important, she has people around her who care deeply about her, and whether I’m there or not, I know they are giving my mother the best care possible.

(As an aside, I am not only blown away by the care my mother receives, but by the care all of the residents receive. One woman no longer has the ability to speak, but that doesn’t stop the aides from giving her as much attention as they give everyone else. They attend to her as if she were their own parent, helping her put on her lipstick and the perfume that she loves.)

And the food—it is wonderful. At my mother’s first nursing home in Florida, my father had to bring all her meals because the food was inedible and she was losing weight. Here, the food is so good that, when I’m visiting if Mom does not finish what’s on her plate, I eat it! And if she wants something special, the aides cook it for her. She only has to ask. The residents even help create menus at their monthly house meetings, and many of their recommendations end up on the dining room table.

If I had to sum up what makes the Small House idea so powerful, I would say that it is the respect and the caring. The people who work there make my mother feel as if she has choices, because she does—about when to get up, what to do with her day, what tasty things to eat. And that is so important given how few choices she, like other older adults, has in other areas of her life. Every staff member I have dealt with has been so kind and giving, to my family as well as to Mom. That speaks not only to how well trained the staff is, but also to how happy they are in their jobs. And you definitely want happy people caring for the people you love.

It has been a long journey, but Mom is now in the most supportive, the most respectful, the most caring place possible. My sisters and I all agree moving Mom was the best decision we have ever made.

Hear more of Chari's story at the upcoming Long-Term Care Regional Roundtable.

Chari Tager is a dedicated daughter who enjoys spending her free time with her mother Ruth, a current resident at one of The New Jewish Home’s Small Houses in Westchester.

Tags:  caregiver  long term care  nursing home  patient and family engagement  small house 

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The Double Helix

Posted By Suzanne Mintz, Monday, October 27, 2014
Updated: Monday, October 27, 2014

My husband Steven has MS and he has an alphabet soup of doctors to deal with the various other conditions the MS has spawned. Our primary doctor is in a family practice that is affiliated with an ACO. Some of the others are independent providers; others part of a large delivery system. Some we’ve known for many years, but others are quite new. Regardless of the differences we usually have good care experiences.

Since being a member of The Beryl Institute I have often tried to determine what it is that makes this so and I have decided that we have a lot to do with it, how we present during office visits; the fact that I am always present; that we are clear about why we’ve come or were told to come. I carry a notebook, refer to it and take notes. We try to establish a personal rapport, be succinct in our conversation and, at least with our family doctor, use the portal frequently.

Despite these good experiences, I am rather peeved that I don’t exist in a formal way in Steven’s records. There is no listing of my being Steven’s family caregiver, in addition to his next of kin; what my work as his caregiver actually entails; how long I’ve been actively providing physical care; what my other responsibilities are, how long I have been doing this work, etc. It does not seem to occur to anyone that if something happened to me it would impact the care that I provide to Steven; that we need to be viewed as a dyad and treated as such.

Last year I had an accident that made the need for this understanding perfectly clear. I fell down the stairs and I was unable to fully continue being Steven’s caregiver for more than a month.

The September issue of Health Affairs carries my "Narrative Matters" article that recounts the experience and explores the need for a new approach to chronic illness care, one that addresses functional and social needs as well as medical ones, an approach that includes a more active role for family caregivers on care teams, care plans that reflect patient and family goals, and treating patient and caregiver as a dyad, a single unit of care, because like a double helix we are intertwined. What affects one affects the other, and visa versa.

You can read, or listen to, the article here.

I act. I am active. These are direct. They are strong. The term 'patient activation' has gained prominence recently, but it is completely off the mark. Human beings can’t be activated; only robots, garage doors and military units. Check the dictionary. I did.

Rene Descarte said "I think therefore I am." In healthcare, I act. I provide information. I ask questions. I am, or should be the starting line, the center point of all that follows. Patients and family caregivers have always been the objects of healthcare, those whose wishes are often ignored; those to whom things are done. Now is our time to speak up, to act and to be part of the team. It is time for patients, families and providers to move beyond engagement. It is time for all of us to get married.

Suzanne Mintz is a thought leader, author, family caregiver and advocate. She is the founder of Family Caregiver Advocacy, a consultancy focused on improving care and quality of life for families living with multiple chronic conditions. She is the co-founder of the National Family Caregivers Association and was its CEO for 20 years . 

Tags:  caregiver  family engagement  patient  Patient Experience 

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A Caregiver's Guilt

Posted By Sara Shearkhani, Tuesday, June 24, 2014
Updated: Monday, June 23, 2014

Have you ever felt that breathing is hard and painful? Have you ever felt that you need to run away and leave everything behind? Have you ever, ever, lost your dreams? Well, cancer makes you feel all the above.

Do not get me wrong; I am not the cancer patient. I am the caregiver. I am the one who everybody asks, with a sad voice: How is your husband, the cancer patient, doing? And they never ask, how I'm doing. And that's why I had so much trouble writing this piece. It seems nobody believes that it's my story too; even me! The feeling of guilt is unbearable. Is this my story to write? Do I have any right to write about my husband's story? Do I, as a caregiver, have any story to tell? If I do, why do I feel so guilty writing about myself, my pain, my story? Why do I feel guilty?

When he was diagnosed with cancer, we were told that it was his story; it made sense to me – for a while. But, eventually, I realized something was wrong with this picture. And with that realization came solitary, lonely, and crushing guilt. You continually question your actions and attitudes: Am I being selfish? Am I a bad wife and an awful caregiver? Am I betraying him by being selfish? Does it mean I will leave him?

In any case, the problem became clear when I had to deal with his seizures. The doctors, pretending I wasn't there, asked my husband what his seizures usually look like! Okay! I stared at the doctors, so they would feel uncomfortable and notice me. How on earth would he know what his seizures look like? I am the one who gets to watch him during the seizures. Yet, I did not dare speak. After all, it was his story!

Or, probably, the feeling of guilt came when I was administering all aspects of my husband's care since he was in denial and shock and wouldn't do anything at all. It was a great deal of responsibility; you have to be really careful about the decisions you make for the patient: They might be wrong; you will be blamed for it. At best, you need to explain yourself all the time. Like the one time that I took my husband to ER for a seizure that according to his oncologist was a focal – or limited – seizure; the doctor wrote to us that such behavior – taking my husband to ER – only served to intensify our anxiety; we needed, he said, to "move on!”. Let me explain something for you; we were on a trip and during the seizure my husband bit his tongue and blood was all over the place. I did it again; I'm having to explain myself, again!

I felt guilty when I experienced all the side effects of the chemo on his first day of chemo! The poor thing ended up taking care of me. Ah, such an awful caregiver I am! I also felt guilty when I made good friends through support groups and I got to transform my life with their help. After all, it's his....story…

I guess the point I'm trying to make is I, as a caregiver, have had a tough time dealing with the situation. My fight started the very moment his fight began. And everybody, from myself, to you, dear reader, needs to understand that it is OUR story. So, next time you talk to a caregiver, do me a favor, and ask her or him: "How are you doing?”

Sara was a Ph.D student in economics but had to take a break to help her husband with his treatment for brain cancer. She is now a patient and caregiver advocate and has changed her field of study to health policy.

Tags:  caregiver  family  guilt  patient advocate  patient experience 

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Turning Lemons into an Excellent Patient Experience

Posted By Diana B. Denholm, Ph.D., Monday, December 2, 2013
Updated: Wednesday, November 27, 2013

Reading Dr. Wolf’s Patient Experience blogs, we learn the importance of involvement in order to achieve excellence, that patients are partners and that we are the patient experience. Whether we’re actually the patient, or part of family or professional care teams, we all make up the patient experience. While instituting change may be arduous, if we see a problem, I believe it’s our responsibility to try to do something about it. We need to get involved and propel that move toward excellence – even if life has thrown lemons at us – or maybe because it has.

In 1999 my husband, John, received a heart transplant at a major teaching hospital. While in intensive care, he was intubated and was put in hand restraints so he couldn’t pull out the tube. Although it was still within his reach, his nurse call button was broken. Although the walls around him were glass, his charts were taped to the window blocking all view of his face. Then something went wrong - and he started choking. He was in distress, frightened and in danger - and he couldn’t get anybody’s attention to help him. Here in one of the finest teaching hospitals in the world, my husband had no way to signal for assistance. It was horrible for him.

I’ll never forget how panicked he was when I came into his room and discovered this inexcusable circumstance. I’ll never forget how appalled and angry I was that this had happened to my Darling John! What a horrific patient experience!

Once out of danger, he was given a piece of paper with the alphabet on it and told to point to letters to spell out what he wanted to say. This ridiculous method was infuriating. Yet, any time you or your loved ones are hospitalized, you face the possibility of encountering similar frustrating, frightening and dangerous circumstances because patient communication methods are often sorely inadequate. This shouldn’t happen to you, nor to those you love and care about.

Rather than citing the hospital for negligence, I did something more constructive and more important. I invented a patient concierge system to help every hospitalized person, you and your loved ones, have a better and safer patient experience.

Of course you want to have your loved ones close when you are ill, and loved ones want to be close to you. Yet visits aren’t always allowed. My secretary had a heart attack and was hospitalized for several months. Because she had a trach tube, written notes were her only form of communication. She was in a long-term relationship, but her gentleman friend was not allowed to visit because he wasn’t a relative – thus creating a greatly diminished patient experience for her. Picture your cell phone and computer in 1999 and you’ll quickly remember how difficult it was to communicate with anyone – even if you could get cell service. So, technology didn’t even provide a serviceable option. As a board certified medical psychotherapist, I know these loving interactions are crucial to a compassionate experience and to creating the most beneficial healing environment.

Instead of focusing just on the needs of the professional care team, which was the norm for hospitals for many years, the focus desperately needed to be shifted to patient-family centered care practices providing direct access links to care staff, support services, food services, and family and visitors. Though it’s taken many years since this 1999 incident, we’ve seen the tide begin to turn making the patient experience and patient satisfaction so fundamental that reimbursements are now linked to them. Patient partnering and involvement are what turned that tide toward an excellent patient experience.

Diana B. Denholm, Ph.D., an internationally recognized caregiving expert, is the inventor of myPAL™ – Patient Access Links and the author of The Caregiving Wife’s Handbook ( which is endorsed by the AARP, National Council on Aging and Mental Health America. She currently writes for Psychology Today, Stroke Network, PBS and a variety of print publications. She may be reached at

Tags:  caregiver  communication  interactions  patient centered care  patient experience  patient satisfaction 

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