When Katie was just 13, her mother noticed that her smile looked more like a grimace. This simple observation was a life-changing one, leading Katie to a diagnosis of myasthenia gravis, an autoimmune disorder. Typically, a neurotransmitter called acetylcholine binds to muscle receptors, triggering them to fire. With myasthenia gravis, the body creates antibodies that block or destroy those muscle receptors, causing muscle weakness, usually in the face.

For Katie, this meant that she experienced periodic grimacing, blurry vision, and a weak voice. She managed the condition with a host of drugs, including ones that improve communication between nerves and muscles, drugs that reduce the autoimmune response, and supplements that help with sleep and inflammation.

A worsening of symptoms

Despite her medication protocol, Katie’s symptoms worsened when she hit her mid-20’s.  She started to experience tingling in her hands and toes and a crawling-like sensation on the skin of her legs. She also started to display some symptoms of irritable bowel syndrome (IBS) and noticed that when her stomach was bothering her, all her other symptoms seemed worse.

In her search for answers, Katie saw five different doctors, including a rheumatologist, neurologist, and gastroenterologist. Unfortunately, none of them were able to help her.

Because her care wasn’t being coordinated among the various doctors she saw, it was very fragmented. And as soon as Katie developed symptoms outside a particular doctor’s area of expertise, she’d be referred to another specialist.

Unfortunately, this only convoluted things, because Katie was forced to share her history over and over again, trying to make sure she remembered all of the significant details of her complicated medical background. In the hopes of finally getting a diagnosis that would explain the relationship between her unusual symptoms, Katie sought help from a holistic doctor.

To prepare for the visit, Katie created a visual timeline that tracked her autoimmune and IBS symptoms. Not only did this give her the opportunity to tell her story in a cohesive way, but it was also useful for her provider who found it easier to view her medical history in its entirety.

Source: Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation.

Katie reaches a critical turning point…

While she still didn’t have a diagnosis, she became more active and engaged in tracking her symptoms. As a graphic designer, she created a series of designs, including a visual symptom map and cartoons to better illustrate what she was experiencing.

In addition to these diagrams, she began using an app, MyMee, that allowed her to track her symptoms, as well as everything she ate and drank. A coach interpreted the results, and in a few weeks, noticed a trend—within an hour of eating fruit or high-fructose sugars, the burning sensations in Katie’s hands and feet intensified.

As a result of that observation, Katie changed her diet. By eliminating fruit, maple sugar, and honey, she experienced a significant reduction in the uncomfortable symptoms she was experiencing.

Katie’s experience illustrates how increased engagement improves medical outcomes.

Jan Oldenburg, principal editor of the book, Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation, from which Katie’s story is excerpted, says she believes that patient engagement is highly influential in health, particularly when it comes to patients with complex or difficult medical histories.

I spoke with Jan Oldenburg at length to find out more about this subject and how medical practices can make engagement easier across the board.

What does patient engagement mean to you?

“In the health care space, we talk about patient engagement as if it’s something that we can do to people when quite honestly, it’s something people choose for themselves,” Oldenburg says. “So we can create environments in which it’s easy for people to get engaged.”

She adds, “I am a firm believer that part of our role in working in a practice, in thinking about engaging patients, is really to think about all of the different ways that people can engage with us—whether that’s in person, by phone, or by computer—and make sure that every one of those channels is easy, straightforward, that we do appropriate hand-offs between channels, and that whichever channel is right for a person works really, really effectively for them.”

What role do patient stories play in patient engagement?

“I think it’s very linked…people engage when they feel heard and listened to. That starts in the office and it starts with people really being interested in the individual and taking the time to hear their stories, taking the time to talk to them about what’s going on.”

For example, she says, “If you have a patient portal, some of your best ambassadors are the phlebotomists who gather blood and say to patients, ‘You’re getting your blood drawn. Did you know you can probably get those results faster if you sign up for the portal than if you wait for them to come in the mail or a phone call?’

“The ability to view a secure message from your doctor or care team is another really engaging tool. Part of the reason for that is because it’s about dialogue and the chance to get your questions answered in a very straightforward way.”

What types of technology can help patients tell their stories?

Oldenburg favours an open notes system where doctors engage in rigorous notetaking, and patients are given the opportunity to view those notes and even annotate them for improved collaboration.

She says, “doctors can facilitate this by being faithful in recording how the person describes their medical history. Not only does that help other physicians come in with a body of knowledge about the patient, but in an open notes situation, it also tells the patient that their doctor cared enough and was listening to them enough to actually take notes about their story.

These things start to create this strong sense that ‘I am known and cared about’, not just as a person who has asthma but as a person who has a life history and personal goals.

Oldenburg particularly likes the idea of open notes, adding, “One of the really cool things that a couple of provider organisations are starting to experiment with is the idea of collaborative notes where it’s not just that patients can see their doctor’s notes, but they can actually then go in and collaborate on them by annotating those notes and saying, ‘well, it wasn’t quite like that, it was actually X’, or ‘I think it’s important that you know these three additional points weren’t captured in the doctor’s notes’, so that the notes themselves become a collaborative work between the patient and the provider.”

How can practices set up an environment that encourages patients to share their stories?

“I can’t over-emphasise how important education is and I think having access to your clinical data is a really important part of that,” Oldenburg says. She adds, “clinical practices can focus on giving patients clinical information such as diagnoses, test results, immunisation history and medications, and also providing contextual education about it… so [patients] don’t have to go to Google and potentially find a source that’s not super accurate”.

Oldenburg also suggests that having the ability to securely message a doctor or care team is another way patients can feel confident sharing their stories. She mentions a study of patients who had an email relationship with their doctors that found they had better control of their medical conditions.

“The theory was that the [patients] asked questions when things came up about how to manage their condition, and it gave them both a better knowledge base and more confidence that allowed them to actually change the [course] of their illness. So that’s a very clear way that practices can surround people with information and knowledge”.

Katie similarly feels that access to medical records and improved collaboration are two important keys to better medical outcomes, as we’ll see when we return to her story…

Katie receives a second diagnosis

While Katie experienced a relief in symptoms once she eliminated certain foods, she still didn’t have a diagnosis to explain her medical problems. That wouldn’t come until five years into her symptoms when she visited a multispecialty clinic.

Katie brought in all her medical records and visual diagrams that she had created from the feedback from the five different specialists. Because she understood and documented her story so well, she was able to give the professionals a clear picture of her illness. This made a huge difference.

With the team’s collaboration, Katie finally received her long-awaited diagnosis: she had Sjogren’s syndrome, another autoimmune disorder that attacks moisture-producing glands, and also affects joints, the gastrointestinal tract, and other organs.

Although she wasn’t given new medications because she was already taking immunosuppressants, she felt immensely relieved to finally have a diagnosis. Today, she thinks that medical practices should focus on high-tech, as well as high-touch components and believes that the best doctor-patient experiences are ones that don’t feel rushed or impersonal.

Katie’s story clearly illustrates how beneficial patient engagement is to health outcomes, and why it’s so important for clinics to promote engagement through active listening, collaboration, and technology.

As Jan Oldenburg points out, patient engagement was the key to Katie’s improved health. “It was really about [Katie] finding a way to tell her story…that helped make a difference in the actual diagnosis.”

Jan Oldenburg

Patient Engagement Strategist, Author/Editor

Jan is a US thought leader on consumer health information strategy and patient engagement. She specialises in ehealth roadmaps, patient and personal health engagement, digital health technology selection and implementation. Jan is the author/editor of 'Participatory Healthcare: A Person-Centered Approach to Healthcare Transformation', and primary editor of 'Engage! Transforming Healthcare through Digital Patient Engagement'.

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