Deep reporting on super-utilizers debunks health care assumptions

A few years ago, I had a strong hunch that it would be a revelation to write about a fledgling partnership of health care providers, community organizations and social service caseworkers that set out to care for some of the most challenging patients in the health care system. I was right; I just didn’t realize at the time how little I understood.

In 2011, I was new to the beat, covering the business of health care for The Morning Call of Allentown, Pa. Although I was a long-time investigative reporter, our health beat had seen little turnover for decades and I lacked deep sources in the field. However, I did see that the environment was ripe for storytelling. Hospitals are the biggest employers in the region. Obamacare had passed into law, even if I had little idea at the time what that would mean. And technology and economic trends seemed to guarantee that exciting changes would come fast and furious.

So I studied the environment and came across an intriguing article in The New Yorker about a program developed by a doctor in Camden, N.J., about 90 minutes away. The doctor, Jeffrey Brenner, used claims data from Camden hospitals to identify local “hotspots” of high health care use. He found places where people used expensive emergency rooms over and over, often for needs that could have been addressed by family physicians. Brenner’s key step was to explore why these individuals used health care resources this way. He exposed a system of highly fragmented care, where mental health needs often went unmet. Patients were isolated, confused and faced a series of barriers to getting healthy, including poor communications, transportation problems and social stigma. Costs mounted to the point where the top 1 percent of patients accounted for 30 percent of health care spending in Camden. It was easy to see that if patients got better care, unnecessary spending could be cut and health would improve.

The partnership in Allentown wanted to emulate Brenner’s work, and I did a brief story about him coming to speak locally. The local group then secured a three-year Obamacare grant to try his care model and I had a story to pursue.

While I was excited to consider a project with this group, I also understood I had no standing with them – they didn’t know me, and I didn’t know them. I felt I needed to build the relationship if I were to get more than a quick-and-dirty, parachute-in, hustle-out story.

I met with the Allentown partnership’s leaders a few times before I met a patient. I felt it was vital to establish credibility with them, so I was explicit about my intentions: Report on the individuals in the program and the patients to see if Brenner’s model could make a difference. I would report successes and failures, and use only patients who would agree to be named.

This story took longer to develop than I anticipated, partly because the partnership had organizational challenges. Among them, it miscalculated how long it would take to get agreements from local hospitals to secure claims data. Fortunately for me, as they worked out their developmental issues, Obamacare was gearing up for its first open enrollment, which was the most pressing health care reporting issue of the time. I had only pockets of time to meet patients.

I also still had to get the rank-and-file workers in the partnership to feel comfortable with me. These were not people who were used to dealing with the media, and they had concerns that my stories would fall back on clichés about poor, undereducated people who sometimes struggled to function well in society. Understandably, they did not want their patients seen in a poor light. Some of them never got completely comfortable with me.

I met my first patient through a devoted parish nurse and eventually got to see him without her present. We exchanged phone numbers too, so I could check in with the patient quickly.

On occasion, I will share quoted material with sources in drafts of the stories. I did so here, as that helped develop confidence between me and sources in the partnership. That’s an ongoing issue with medical professionals and researchers, many of whom think newspaper stories can be peer-reviewed. I found that explaining to them the rules of the game in advance helped.

Once free of the immediate Obamacare reporting demands, I stepped up interviews with patients. I began to understand the problems patients had with transportation, social isolation and other needs, and directed my reporting to these issues. The time I had to understand the issues helped me envision the series beyond the opening scene-setter. I would not have been able to write more than one story without this two-and-a-half months of extra reporting time.

Being accepted into the fellowship was an extra bonus. I got more ideas about stories and met a source while in Los Angeles who provided great help on a transportation-related story.

A personal issue developed during this time too. I received an attractive job offer in New Jersey, which I accepted. I committed to completing the stories, although I knew that I would not be in Allentown to follow up or push stakeholders to address questions the series raised. That was disappointing, especially because the stories were designed to run before the partnership knew how – or if – it would continue after funding runs out in the summer of 2015.

One challenge I encountered was the lack of data. I was hoping to see hard numbers on the patients’ health care use and any changes since they were enrolled in the program. That was not possible since the partnership was only beginning to look at patient data from local hospitals. Brenner’s team only now is conducting a full-blown study to measure its impact, for that matter.

Taking time was critical in getting to know the patients, who live in difficult and sometimes chaotic circumstances. Some had no telephone; none I interviewed had a car. They did not always keep appointments. Many of them are chronically ill and it took some digging to locate them when they were hospitalized. Some had criminal records that could be checked. Some gave me their medical records, but they were often haphazard. I also checked records from the medical transport provider and 911 call logs. One hospital got a patient to sign a HIPAA waiver so it could discuss his care. Otherwise, providers would not discuss individual cases.

One patient, the one with whom I had exchanged telephone numbers, was surprised to learn that he was identified in one story. This was a surprise to me, since he had posed for portrait photographs and had multiple conversations with me. This illustrates the unpredictable nature of some patients. Other patients were happy with the coverage.

I also experienced how little would be gained from one-time interviews. I spoke to people at other sites around the country that shared in the grant with the Allentown partnership and came out with nothing that I wanted to use. That proved to me the value of deep reporting for this story.

It’s worth looking into your community of so-called “super-utilizer” patients. You can unearth some moving personal stories and get a ground-floor view of how uncoordinated care keeps patients from getting better. It was eye-opening to see how blaming and stigmatizing patients by the providers – not the partnership – further hampered patients’ well-being.

Reporting this story offered our readers a view into a community of people who live in the shadows. It also changed attitudes I had about health care. Going into the story, I thought the “soft skills” the partnership brought to the patients were secondary to the physical health care they needed. I was wrong. I also learned – in a much deeper way – the importance of the social determinants of health.

I was also humbled. I saw how little I knew about this subject at the outset. I developed a new respect for patients who fight against long odds to survive a system that, at times, looks like it wishes they would just go away.

Photo by Timothy Darragh/The Morning Call.