A recent, personal experience I had as my father’s caregiver shed a whole new light on my professional work in the field of healthcare technology and patient and family engagement.

My father was recently hospitalized after waking up one morning with extreme belly pain. After running tests in the emergency room of our local hospital, the ER doctor informed my father and I that he has a Small Bowel Obstruction (SBO).  I should pause here and explain that my family and I live in the heart of Silicon Valley in Northern California, and that the hospital where my father was receiving care is known throughout the region as state of the art in terms of its technology. After seeing my father safely transferred to a beautifully appointed hospital room, I asked the nurse if she could print out my dad’s medical records from his emergency room visit as well as the test results so that I could review them.  The nurse very kindly obliged, after asking me to fill out a triplicate form with carbon copies – something that (keeping in mind where the hospital was located) seemed oddly out of place and outdated. I couldn’t recall seeing or completing a carbon copy form in about a decade, but I completed it and the nurse provided me with what I’d requested. The notes were indeed very helpful to me in understanding my dad’s condition and plan of care.  
On day two, I again asked for my dad’s medical notes to keep up with his plan of care, but this time was told that only the charge nurse could handle my request.  However, I repeated the process from the day before with the charge nurse and she helped me obtain my dad’s medical notes.
On the third day, when I requested copies of the notes, I was suddenly told that it was impossible to provide me with this information and that the only way I could receive it was to fill out (yet another) form which would take ten days to process, after which I would receive the medical notes. When I pointed out my safety concerns with this process – mainly that I as my dad’s primary caregiver was instrumental in his recovery and needed to be kept informed about his health – she informed me that this was the hospital policy and there was nothing she could do to change it. Not only that, but after learning that the charge nurse from the day before had helpfully printed out my dad’s notes, she walked with me over to the charge nurse and threatened to write her up if she ever repeated that behavior again (i.e. How dare you help a family member by giving them information about their loved one!).  At this point the only updates I was receiving were when I had the opportunity to have face to face discussions with the doctor, which were helpful but not consistent. The medical notes were a much better way of helping me partner with the health care team in understanding how my father was being cared for; they answered a lot of questions that I had.
Troubled by the inconsistent information I was getting, I decided to raise the issue with management and went looking for the hospital’s Patient Experience Officer (PEO). In the lobby, the information desk did not know what the PEO was and suggested I go to Patient Registration.  Upon arriving at Patient Registration, I was met with blank faces – no one had any idea where to find the Patient Experience Officer.  When they looked it up in the directory, they gave me directions to another building, but when I arrived there the room was locked and only accessible to hospital employees.  I then made the trek back to Patient Registration. After a ten minute wait, they took my name and phone number and told me I would get a call from someone.  I never heard from anyone.
Ultimately, I did get in touch with the Patient Experience Officer, but I am fairly sure the fact that I work in healthcare and already had contacts at the hospital helped to make this happen.  It struck me as deeply ironic that someone whose title was to reflect the patient experience was so well hidden from patients. After several conversations with the PEO attempting to sort out what was the actual hospital policy around obtaining hospital records, I was told that patients are able to go to medical records and pay an expedited fee (for information about themselves!) to obtain the records on the same day.
This experience opened my eyes to the deeply rooted cultural bias in our healthcare system that “doctor knows best”, and that patients (and by extension, families) are the passive recipients of care – rather than active partners and decision makers in it. While these paternalistic attitudes are slowly changing – pushed by the younger generation, technology that allows for greater openness and transparency, and a greater awareness that clinicians are humans too, and make mistakes – these deeply held beliefs are nonetheless reflected in the systems and policies of our health care institutions. I look forward to working with my local hospital to change their policy to ensure that other caregivers and patients have access to daily progress notes, lab tests, and their plan of care while staying in the hospital. This allows patients and families to act as an extra set of eyes and ears, to become part of the care team, and to be recognized as possessing unique expertise. Both patients themselves and their families have the capacity to help reduce medical error and hospital admissions and readmissions.
My own company, Doctella.com has drafted a white paper, Help Me Help You that outlines how patients and families can partner together to improve care, quality and satisifaction. Doctella.com provides easy-to-use patient checklists that assist with patient-physcian communication, shared decision-making and empowers patients to be their own best safety advocate. Another powerful tool available to over 5 million patients (and growing steadily) is OpenNotes, essentially the opposite of what I’ve just described in my experience here. Healthcare institutions that use OpenNotes commit to sharing their medical notes with patients and then discussing these notes with the patients. To find out if your healthcare provider uses OpenNotes, click here. If you have a health care story you’d like to share, our dear friends at the Patient Voice Institute will take it in email, text, or video format (60 seconds).