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Organizing And Administering Our Own Care

Emerging from a foggy year of treatment for stomach cancer, I am vividly aware of how much time and energy it takes to meet the daily demands of a serious illness. When I think back over the past 35 years and my treatment for now four different cancer-related diagnoses, I am amazed by how much has changed. The diagnostic and treatment technologies are light years more sophisticated and effective.

I am also taken aback by how much more we, as patients, and our loved ones who care for us, must know and do to organize and administer our own care in response to a serious diagnosis.

From an economic standpoint, this makes sense: the marketplace drives innovations to become simpler and cheaper. In modern American health care, this means that new drugs, technologies and procedures are re-engineered so they can be offloaded from expensive professionals to patients and those who care for them – and who work for free.

Think about it:

Advances in technology, such as laparoscopic surgery and in-home devices mean that we and our families take on responsibilities for care at home that formerly were administered by professionals in the hospital: dietary needs, symptom management, rehabilitation and use of devices for infusions, wound-healing, feeding and breathing, for example.

Advances in drugs, such as those for HIV/AIDS, rheumatoid arthritis, cancer, asthma and diabetes allow many to live long and well, but only if we are able to successfully adapt our daily activities to accommodate the demands of the drug protocols for the rest of our lives.

Advances in knowledge have led to a proliferation of specialists, tests, procedures and treatment settings, each of which generates data that are critical for other clinicians to use in treating their patients. But unless each piece of information finds its way to the appropriate professional in a timely manner, it is useless. In the absence of professionals’ commitment to care coordination and slow implementation of practical, interoperable electronic health records, the administrative tasks of managing appointments, scheduling tests, and communicating their results falls to patients and those who care for them at home.

This trend toward simpler and less expensive means that previously exotic, expensive treatments are now widely available to all. The problem, however, is that if we don’t show up for the tests, take the pills as prescribed, get the surgery and care for ourselves competently afterward, the potential of those innovations to improve our health will not be realized. Unfortunately, the majority of us don’t even know about these new responsibilities, let alone take them on. Only about one-third of us feel confident that we can care for ourselves and one third or fewer of us report performing most of the tasks related to finding and using health care: we have no idea what our insurance covers; we adopt a casual approach to taking prescription medication; we assume that coordination of medical information among clinicians is automatically taken care of for us.

There are an infinite number of reasons we have not dramatically increased our participation in our health and our care. Most of us are mostly well most of the time and so we don’t realize that our role has changed; we only discover it when illness strikes. Many of us don’t realize the extent to which our actions now can have a powerful effect on whether treatments actually work or not. Some of us resist these new responsibilities: we are intimidated by their complexity or don’t feel it is our job to take them on. And of course, there are quite a few among us who will never be able to achieve what is now required of us to get the full benefit of our medical care: We are too sick. We are alone. We are mentally or physically frail. We lack the basic literacy skills and resources to understand the cascade of new and often complex demands on us.

Our continued inaction means we suffer preventable pain and illness. Our diseases are discovered later and thus are more debilitating. We waste our time and money on treatment plans not followed, drugs not taken and devices that live in the garage.

But our inaction doesn’t only affect us. It constitutes no small threat to the success of the health care enterprise as a whole. Our low level of engagement in our health care currently undermines the potential of the significant and costly developments in drugs, technologies and procedures to produce their predicted outcomes. Our often inadvertent, sometimes clueless, and occasionally avoidable passivity wastes time and money. This situation will intensify as technology increasingly makes it desirable for complex medical tasks to be performed by the cheapest workforce: us.

While there is a lot of talk about patient-centeredness and patient engagement, efforts to date focus on reducing over-use by making people pay directly for non-catastrophic care, reorganizing professional functions and revenue streams in primary care, encouraging individuals to ask questions of their clinicians and providing incentives for us to fill out health risk assessment questionnaires.

Until now, these modest, scatter-shot approaches have reflected both the lack of recognition by professional stakeholders of the size and scope of the responsibilities patients must now assume competently if we are to benefit from our care and a lack of understanding of the specific help we need in meeting them.

This month, Care About Your Care, a national media campaign sponsored by the Robert Wood Johnson Foundation, the U.S. Department of Health and Human Services, Dr. Oz and multiple other sponsors, rallied leaders from the public and private sectors and the health news and entertainment industries to urge people to learn about how to choose high quality health care.

Will the face and fame of Dr. Oz be the wizard that can bring this message home to Kansas – and the rest of the country? I hope so.

*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*

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