How OpenNotes Builds Patient Engagement

Patients are encouraged to become engaged in their healthcare, but they can't do it unless providers give them the tools and information they need to actively participate.

Everyone agrees that patient engagement is important. No one agrees on what, exactly, the term means. A 2012 study published in the Journal of Participatory Medicine, "The Many Faces of Patient Engagement," concluded that there is a lack of "consistency in terminology and definitions around the concept of patient engagement."

The presenters of a session at the HIMSS 2015 conference last month, "Shaping the Frontier of Patient Engagement: A CNO/CNIO Perspective," grapple with the nebulous nature of patient engagement. Laura J. Wood, DNP, MS, RN, who is senior vice president for patient care service and chief nursing officer at Boston (MA) Children's Hospital, and Mary Beth Mitchell, MSN, RN, BC, CPHIMS, the chief nursing informatics officer at Texas Health Resources in Arlington, TX, discussed the CNO and CNIO perspectives on the evolution of patient engagement.

Despite the debate over definition and application of patient engagement, Mitchell boils it down to a single, simple description: "It's how patients become invested in their own health."

Patients like OpenNotes
One method Boston Children's is using to increase patient engagement is OpenNotes, the national initiative from the Robert Wood Johnson Foundation. The effort began in 2010 when primary care physicians at three healthcare institutions began sharing visit notes online with their patients. The sites were part of a year-long study to explore how sharing clinician's notes affected care. The results found that patients frequently accessed visit notes, reported a greater sense of control and understanding of their medical issues, had improved recall of care plans, and adhered better to medication regimens. Almost all patients wanted the practice to continue, and no physicians had opted out after a year. There are now 30 hospitals and health systems participating in the OpenNotes initiative.

"OpenNotes is a wonderful example of patient and family participation in their care, and what I think may be a harbinger of really meaningful activation," Wood says. "There's kind of a no-turning-back once you move on this, it seems."

Engagement requires transparency
In my opinion, providers need to be more proactively turning towards the type of patient engagement that, like OpenNotes, fosters healthcare transparency. Healthcare professionals play an enormous role in cultivating patient engagement because they're the ones who provide the tools and information necessary for patients to participate in their healthcare. Patient engagement is a two-way street, and I've personally seen how a providers who don't foster engagement can negatively influence a patient's health.

In the spring of 2012, my dad discovered a mole on his neck. (He gave me permission to talk about this, so I'm not violating HIPAA) He had it removed by a dermatologist who said the pathology report showed nothing to worry about. We were never offered the chance to see his chart or the pathology results.

A year later, a mass appeared in that same area on his neck and he had a second biopsy. The ENT and pathologist who did the second biopsy thought something was suspicious and sent slides to a large teaching hospital for further analysis. It turned out that the "nothing to worry about" mole and mass were a rare form of skin cancer called spindle cell melanoma. The cancer had infiltrated one of his lymph nodes.

I hadn't read my dad's medical records until he had obtained them to send them to a melanoma specialist, but once I finally did read them I was furious. The words "spindle cell" were all over the original report. How could that dermatologist have said everything was fine? To this day I question whether he read the report in its entirety.

At the advice of a melanoma expert, my dad had an excision of the abscess and removal of multiple lymph nodes. He now goes for serial PET scans and frequent follow-up visits with his oncologist but, thankfully, he is cancer-free.

For safety's sake, give us our records
During a recent RWJF First Friday Google Plus Hangout on improving healthcare value through OpenNotes, I was pleased to hear the participants talk about how transparency and patient engagement can improve patient safety.

"Another really important part of patients reading their notes is the fact that they can contribute to safety monitoring," says Jan Walker, MBA, RN, co-director of OpenNotes and assistant professor at Harvard Medical School. "Care is really complicated, we're all human, we all forget things, and having another set of eyes on what's going on can probably help people avoid errors."

This is exactly how our family would have benefited if my father's dermatologist had engaged us through a tool like OpenNotes. We could have asked questions to clarify the situation and made sure all parties—provider, patient, and family members—had reviewed the necessary information.

For clinicians who are resistant to sharing notes and providing transparency in their healthcare practice, it's time to rethink that stance.

"There's absolutely no reason to hold off," Connie B., a patient who uses OpenNotes, said in the Hangout. "From a patient perspective, I can't understand why anyone would knowingly not have it available to their patients."

And as my family learned, when it comes to your healthcare, what you don't know can hurt you.