Patient Advocacy: There Needs To Be an App For That

Earlier this year, my college-aged daughter endured a grueling medical crisis. She was in bone marrow failure and required a transplant--a critical procedure that led to a month-long stay in a major hospital in the Southeast. I am so appreciative of the nursing staff and the doctors' ability to treat my daughter, their dedication and medical knowledge was unbelievable in helping her through the process.

For about three months after her discharge date, she returned to the hospital almost daily. We spent our days taking her to her treatments and fighting to get even the most basic information from doctors and nurses about our daughter's medication and treatment plan. The frustration caused by the void of information was overwhelming. There seemed to be no process to ask the patient for any feedback. The one exception was when the hospital's head of housekeeping stopped in to find our daughter vomiting from the intense chemotherapy. Instead of offering to help, she asked if the room had been adequately cleaned--and whether the food was okay.

In the weeks and months during and after the hospitalization, there has been no effort to engage my daughter as a patient or as a claimant. Neither the hospital nor the insurance carrier has reached out to gather feedback from us as the policyholders. The communication wasn't poor--it was nonexistent. It is time for healthcare providers and payers to focus on customer intimacy and advocacy--and technology is the key.

[Previously from Shields: 5 Areas Where Insurance CIOs Must be Cautious]

For years, there has been an active discussion about the need to engage the patient (or the claimant, in the case of payers). Both the provider and the payer need to harness technology, link the patient to a higher level of service, and create more meaningful relationships that can actually affect outcomes. The Centers for Medicare and Medicaid Services (CMS) support and mandate for Electronic Health Care Record (EHR) will dictate and require better sharing of medical records. The Meaningful Use Stage 2 of the EHR initiative provides financial incentives to providers for utilizing the new EHR capabilities to improve patient care. It will be interesting to see if the use is more tuned to reduce paperwork and overhead for the providers. While this is of value and is sorely needed, there exists additional value in improving the relationship and communications between patient, provider, and the insurance payer. I recently talked to an engineer developing a major Electronic Management Record System (EMR). He said that he gets his requirements from the providers, with no input from patients. This is discouraging as there seems to be little appreciation for the improved communications and relationships with the payers and with the patient.

Gerald Shields, The Nolan Company

As the father of Millennials, I have a front-row seat for the digital age. As I watched my daughter search her phone and laptop for information about her medications and treatments, my wife and I created Excel spreadsheets to track dosing, appointments, and other details. I was dumbfounded. Why are patients in the second decade of the 21st Century still filling out generic paper survey forms with the same questions their grandparents were asked?

I imagined my daughter flipping through a hospital-issued tablet with access to real-time data and patient engagement tools. Among the multitude of ideas for applications:

• Online patient surveys to evaluate nursing staff, so administrators could manage performance and create incentive programs

• Online glossaries and other information about processes, treatments, and medications

• Summarized billing statements

• Personalized treatment schedules

• Real-time access to lab results

• Biographical and professional information about doctors and nurses

• Email, SMS, or chat tools for conversations between the patient and the doctor, nurse, or case manager

Now a few questions for insurers: Why does the most common form of contact with a customer happen because of a claim? In my daughter's situation, the insurance company assigned her a "medical management case manager" (I could write a separate blog post about this title). The "claimant" (not "the patient," or "the person") can contact the case manager by 1-800 number (generally leaving a voice message and then waiting for a return call). Where is the proactive engagement about quality of care?

Imagine an insurance company using technology--even rudimentary tools like phones and email--to reach out to policyholders and engage them in conversation about treatments. Imagine them starting conversations and building a rapport even before a claim issue arises.

Then imagine an individual, private portal (or mobile application) where a patient can communicate with a case manager in something closer to real-time. Physicians--especially family care providers--are starting to offer access to portals where patients can see diagnoses, treatment plans, prescription information, lab results, and other data. My fear is that it's not enough. The promise of EMR/EHR is transparency and shared knowledge. Until patients have full access to their records and options, they won't have all the information needed to truly participate in their own care. And until providers and payers can work out the money issues, patients will remain caught in the crossfire.

My daughter is recovering and the prognosis is good. We're thankful for that. But the experience left me frustrated about the lack of communication in the hospital environment--and puzzled as to why we're not using the tools at our disposal to fix it.

About the author: Gerald Shields is Practice Director, Healthcare IT for The Nolan Company. Gerald has over 30 years' experience managing enterprise scale IT functions, with a focus on enabling the business through effective automation. At Aflac, he served as CIO and in senior IT management for over ten years, and is a respected thought leader and innovator in the areas of IT management systems, technology strategy, and mobile technology.