Passive to Collaborative: The Evolution of the Imaging Patient

“You must never be fearful of what you are doing when it is right.” -Marie Curie

Patient-centered imaging sounds counter-intuitive to a specialty of medicine that got its very start by producing dangerously deadly rays.

Historically, radiology has always been more interested in the innovations of imaging, equipment, and the part versus the whole. And yet at the very heart, even the most mechanical of improvements have stemmed from doing the right thing for the patient; shorter exam times, better diagnostic quality, and reduced exposure. As imaging continues to move forward, it’s imperative to look back to see just how far our patients have come and where they are headed.

It is no secret that the science of imaging has changed tremendously over the past hundred or so years of existence. No sooner did William Roentgen discover these unknown “X”-rays in 1895 than fellow scientists joined in to experiment with how to use them. Exciting and new; producing human imagery, otherwise hidden, propelled the industry forward; the patient remained a bi-product.

Improving the experience incrementally with safer methods and better equipment, patients continued on their passive journey well into the early 1990s. Nurses cared for patients, technologists cared for images with limited patient interaction. The very nature of imaging being episodic and ancillary. Passivity was required to hold still, follow directions, and wait. Radiologists were often behind the scenes and hidden. There was a collective conscience to do the right thing for the patient yet inefficiencies on many levels remained. Customer service was reactionary and individualized, a problem many branches of health care faced. Databases for complaints and plans around improvement varied by department and hospital with little large scale unity other than regulatory requirements.

Yet, just as radiology began to ask patients to have a voice in the early 2000s with the introduction of patient satisfaction surveys, online communication, and information technology, “the very systems such as PACS that have helped propel the imaging industry forward have also inadvertently put radiologists further away from their patients,” said Max Wintermark, MD, chief of neuroradiology, Stanford University Medical School. With the ability to read in remote locations along with the number of images per exam growing exponentially over the last several years, more time is being spent reading films, said Wintermark. Time that could be spent with the patient.

Administrators alike became inundated with new data sources that allowed for quality metrics to be measured around the two areas patients voiced the most concern for: wait times and communication. Quality improvement deliverables that still drive the patient experience today.  Yet new trends continue to surface as patients become more vocal: concerns regarding privacy, identity theft, and cost.

Having practiced as a neuroradiologist for the past eighteen years, Wintermark agreed, “today’s patient knows a lot more and is far more educated because of the Internet.”  As a result, their expectations have increased. “This forces us as radiologists in a positive way to think of ways of doing our work to get closer to patients,” Wintermark said. Working on the Patient and Family Centered Commission (PFCC) through the ACR, alongside colleagues and patients, Wintermark has found that, “simple things go far and that what patients really want is very different than what radiologists think they want.” Involving them in their own care is the necessary next step.

Today’s Imaging Patients Want to Understand
Wintermark has found working alongside patients and colleagues within the PFCC that patients want to be able to better understand their imaging exam. Contributing to a toolkit aimed at helping radiologists better engage patients, Wintermark’s team at Stanford customized patient imaging reports to help patients understand their exam more clearly as well as provide accessibility to radiologists. Wintermark found that by normalizing the report by including statistical findings for age ranges, similar to how a standard blood test reads, alarming findings became less threatening and more easily understood. If nine out of ten of the same peer group had similar findings for their imaging exam, patients perceived the report in a more positive light.

Adding to the report a thank you note, postprocedural summary, an introduction to the neuroradiology team, and direct contact information, visibility and understanding is created for radiology that doesn’t take a huge amount of effort. “It’s viable,” Wintermark said.

Today’s Imaging Patients are Informed, Engaged, and Interactive
For patients like Linda Craib, MBA, a former pediatric nurse turned entrepreneur with an extensive health care background, using her understanding of health care along with her personal experience as a breast imaging patient, having the ability to collaborate in her own care is essential. Faced with decision making regarding an MR-guided biopsy close to her chest wall, Craib researched radiologists and organizations. A series of lost images, lack of communication, inability to select a physician, and poor organization created “an erosion of trust and frustration,” Craib said, that resulted in her shifting her care. Craib’s concern with having “protected data floating around” as well as push back from the intake coordinator made her feel responsible for “doing everything” andleft little room for the collaboration she eventually found at a more distant location.[[{"type":"media","view_mode":"media_crop","fid":"51003","attributes":{"alt":"Patient-centered radiology","class":"media-image media-image-right","id":"media_crop_7618953895701","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"6263","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"height: 200px; width: 200px; float: right;","title":"©Aha-Soft/Shutterstock.com","typeof":"foaf:Image"}}]]

Andrea Borondy Kitts, MS, MPH, a mechanical engineer executive turned lung cancer patient advocate agrees it is necessary to be proactive as a patient. “It’s only recently that I have felt comfortable calling up and bothering doctors,” she said. As the primary care giver for her husband during an 18-month battle with end stage lung cancer in 2013, Kitts feels she would have “literally died if her husband’s oncologist wasn’t accessible through email or cell phone.” She wishes she would have had access to the radiologist as well.

Prior to her husband’s diagnosis, Kitts had no idea that she could get a copy of imaging exams. Her inquisitive nature soon discovered she could access and compare her husband’s CT scans using software included in the CT, perform online research, and approach each physician interaction with annotated notes in hand to have a mutual question and answer session.

Patients-Turned-Advocates are the Wave of the Future
Both Craibs and Kitts have taken their personal experiences within imaging along with their professional areas of expertise to become part of a larger, highly knowledgeable branch of patients; the patient advocate. Truly the wave of the future, patient advocates who work with national organizations, including the ACR, offer a respectful voice with stories that are impactful and can drive change. Craib not only offers ongoing advice to the Economics branch of the PFCC but can also share her own life experience to improve how a patient feels about everything from ambient lighting to the artwork.

The advocacy Kitts focuses on includes the promotion of lung cancer screening while simultaneously reducing the stigma around it. Working with the ACR as well as a variety of lung cancer organizations, Kitts hopes to “save the world with information,” she said.

Collaborative Knowledge Sharing Between Patients and Radiologists Pays Off
This new culture of imaging that allows for interactive participation in care while promoting change already has proven success. From a radiologist’s standpoint, “imaging must pay attention to the whole experience and be patient friendly,” said Wintermark. Offering patients the opportunity to design their experience from the angles of the doors to the types of chairs and artwork, Stanford’s new Neuroscience Health Center offers the whole continuum of care needed for patients in a unique setting designed by patients.

Craib, along with Catherine Everett, MD, of Coastal Radiology in NC, are finding success collaborating on a HIPAA-compliant real-time, interactive survey that works to engage breast imaging teams and their patients before, during, and immediately following exams. Combined with a patient experience survey focused outward to the community served, these applications provide “fast, granular metrics to open dialogue and address concerns in real time while also defining referral patterns, drivers within the community, and preferred communication methods for radiologists,” Craib said.

As part of her husband’s legacy, Kitts continues to push forward on many levels, including social media, national organizations, and hospital advocacy groups to improve lung cancer statistics alongside physicians. “Getting the answer is the biggest challenge,” said Kitts and patients need to be informed. As the voice of the patient, Kitts writes for the ACR while working with the American Lung Association, Free to Breathe, and Lahey Hospital’s lung cancer screening team.

“At the end of the day, every one of us is going to be a patient,” Kitts said. “We are vulnerable. But the reality is that all of the life experiences and expertise we have are still there and part of our person.” Understanding patient’s background, encouraging them to have an interactive role, and collaborating with them in regards to their care truly is the right thing to do.

What an exciting time, imaging. May the momentum continue.