Beyond the Rand Report: Making Health Content for Patients, Not Professionals - An article by Andrew Robinson in IHealthCareWeekly, October 10, 2001.

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by Andrew Robinson

Andrew Robinson, J.D., is the Executive Director of Patient2Patient, Inc., a patient-based company that is developing Web-related applications and services to assist patients and their families.

Since the release in May of a Rand Corporation report critiquing the complexity of health information on the Internet, health-focused content providers have been attempting to simplify their content.

But dry, complex content is merely one aspect of a much larger problem with health information on the Internet. The real predicament lies in the sites' psychology as much as in their language. Many health sites regurgitate copy reproduced from medical textbooks ("legacy content") better suited to doctors than to patients. And like many doctors, sites often fail to understand their users and their needs.

On the Internet, each health user shapes his or her own experience by choosing the particular site, or group of sites, that most immediately relates to personal and consequential questions. Given a patient's inherent vulnerability, the impact of the information is profound--it can be empowering, exhilarating or shattering.

A Pew Internet & American Life Project study has documented that the majority of health-users (91%) are seeking information on physical illnesses. They are patients seeking information on their own behalf (43%) or are looking for information on behalf of another (54%).

For a patient or a family member, an Internet health search is an intimate experience. On the Internet, each health user shapes his or her own experience by choosing the particular site, or group of sites, that most immediately relates to personal and consequential questions. Given a patient's inherent vulnerability, the impact of the information is profound--it can be empowering, exhilarating or shattering.

While the Internet could afford a personal and intimate relationship with the user, most health sites still adopt a clinical, distanced, presentation rife with medicalese and jargon. They remain closer to the medical journal format from which they have come, rather than the sensibility and needs of patients towards which they need to move. Such detached content is a legacy from medical journals and the psychology of the medical profession itself.

A clear contrast between legacy content and patient-centered content can be seen in the these two passages on Parkinson's Disease excerpted from prominent, medically accredited health websites:

"Parkinson's disease belongs to a group of conditions called motor system disorders. The four primary symptoms are tremor or trembling in hands, arms, legs, jaw, and face; rigidity or stiffness of the limbs and trunk; bradykinesia or slowness of movement, and postural instability or impaired balance and coordination. As these symptoms become more pronounced, patients may have difficulty walking, talking, or completing other simple tasks. The disease is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time."

vs.

"Parkinson's disease affects one of every 100 persons over the age of 60. Thanks to public health strides and healthier lifestyle choices, many people now live well into their eighties, adding to the impression that the incidence of Parkinson's disease is increasing. While there is, as yet no cure for this condition, progressive treatments allow many patients to maintain a high level of function throughout their lifetimes. It is crucial to note that Parkinson's disease is not a fatal illness." (Emphasis in original).

Imagine how someone who has been recently diagnosed with Parkinson's would respond to such differences in tone and emphasis.

Medical journal content has its function and needs to retain its character of clinical integrity. But most health site information is not intended for medical doctors.

What are the qualities that patients respond to? A study conducted by Pfizer on the doctor-patient relationship revealed that the qualities patients stated were most important to them in their doctors were: compassion (96%); understanding (92%); partnership (86%). It is not a stretch to imagine that patients seek the same qualities in health website content.

Patients certainly seek credible information. But authoritative does not mean dry, technical or impersonal. There must be a way to combine difficult, even painful, information with emotional empathy and a human sensibility.

But there cannot be a single definition or template for patient-centered content. It must stem from an understanding and empathy with the patient experience and a desire to effectively assist patients and their caregivers as they face challenges and engage in intense struggle.