Online Resource Helps Patients Make Tough Decisions

Jan 11, 2013 (08:01 AM EST)

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A new online resource called PREPARE helps patients do advance care planning and manage complex medical decisions. It was developed by Researchers at the University of California San Francisco (UCSF), the San Francisco VA Medical Center (SFVAMC), and the Veterans Health Research Institute.

The nonprofit PREPARE website uses videos and interactive content to help patients identify what is most important to them, how to communicate that with family and friends and doctors, and how to make informed medical decisions. Designed for a population that includes many low-income, elderly and minority individuals, the website content is written at a fifth-grade level.

PREPARE helps patients in areas of advance care planning that go beyond filling out an advance directive form. These include successful surrogate selection, communication with the surrogate, determination of the surrogate's role, and communication with family and doctors.

The researchers who developed the site, led by SFVAMC geriatrician Rebecca Sudore, MD, recently published a paper on advance care planning in the Journal of Pain and Symptom Management. Titled "Advance Care Planning Beyond Advance Directives: Perspectives from Patients and Surrogates," the study identifies gaps in planning for decisions about serious illnesses.

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In an interview with InformationWeek Healthcare, Sudore, an associate professor of medicine at the UCSF School of Medicine, noted that advance care planning is not only about end-of-life care. People may face similar issues when they have a major illness, she said, and they should determine what is most important to them and communicate that to their family and friends in a way that can positively affect their healthcare when a decision needs to be made.

To share decisions with physicians, Sudore continued, patients must be ready to identify their preferences among different treatment options. "You have to have someone who is prepared and articulate enough to identify what's important to them so that the physician can figure out with the patient what's most important."

Sudore noted that choosing a surrogate is also crucial. Although about 15% of patients don't have anyone close enough to them to serve as a surrogate, she said, the rest should select someone to make decisions for them when they can't do so themselves. Unfortunately, many people list someone on their advance directives without informing that person of their choice, or their spouse may not fully understand what they want when they're unable to make their own decisions.

Currently, only 41% of people 65 or older use the Internet, according to a Pew Internet survey. And as of 2010, only 66% of households headed by people over 55 had computers, the U.S Census Bureau found. But, Sudore pointed out, many elderly people have access to computers in libraries and senior centers. Moreover, a survey of one senior center in San Francisco found that most of the people there could navigate PREPARE, even if they'd never used a computer before.

Sudore's research shows that it's much easier for the patients whom the website targets to absorb information from videos and other Web content than from a printed handout. It takes a lot of energy and knowledge to choose a surrogate and do advance care planning, she noted. Watching a video that walks you through it is relatively easy compared to reading about it.

Preparations are also underway to pilot PREPARE in the southern California division of Kaiser Permanente.

Owned by UCSF, the PREPARE site is free to the public and is dependent on grants and donations. The VA and the National Palliative Care Research Center provided the funds for the development and testing of the site. Additional funding has come from the Steven T. Bechtel Foundation and the Hellman Family Foundation.

Clinical, patient engagement, and consumer apps promise to re-energize healthcare. Also in the new, all-digital Mobile Power issue of InformationWeek Healthcare: Comparative effectiveness research taps the IT toolbox to compare treatments to determine which ones are most effective. (Free registration required.)