Anjali Gopalan, MD, is a Robert Wood Johnson Foundation (RWJF) Clinical Scholar in residence at the University of Pennsylvania, and a senior fellow at the Leonard Davis Institute of Health Economics. This is part of a series of essays, reprinted from the Leonard Davis Institute of Health Economics’ eMagazine, in which scholars who attended the recent AcademyHealth National Health Policy Conference reflect on the experience.

Propelled by a highly publicized study funded by a $1.4 million grant from the Robert Wood Johnson Foundation, OpenNotes software has created quite a stir in the world of health care reform since 2010. Its high-profile testing paralleled the rise of the Affordable Care Act and the new emphasis that law puts on the computerization of virtually every part of medicine, including the doctor-patient relationship itself.

OpenNotes is a digital tool with which a physician takes and stores the notes of every encounter with a patient. The new aspect of OpenNotes that has drawn so much attention in the press and professional venues like the AcademyHealth National Health Policy Conference is its ability to provide patients instant access to everything the doctor writes about them.

Subject of Much Debate

The question of how this new kind of doctor-patient information collaboration might ultimately affect either party remains the subject of much debate. The conference session that focused on it was entitled "Stirring It Up: Putting Patients in the Middle" and featured Tom Delbanco, MD, the Harvard Medical School professor who is leading the national OpenNotes development and implementation effort.

Jeff Niederdeppe, PhD, is an assistant professor of communication at Cornell University and an alumnus of the Robert Wood Johnson Foundation (RWJF) Health & Society Scholars program at the University of Wisconsin.

For the past 10 years or so, my colleagues and I have been studying how Americans make sense of public information about the causes of cancer and ways to prevent it. This has brought both good and bad news.

First the bad (and perhaps not surprising) news: many Americans are overloaded with information about cancer prevention and feel powerless about what they can do to prevent it. According to national surveys, one in four say there’s not much a person can do to reduce their risk of cancer, half feel that almost everything causes cancer, and three in four think there are too many recommendations to know which ones to follow. People who hold these beliefs are less likely than those who do not to engage in behaviors that we know reduce their risk of cancer – avoiding smoking and sunburn, eating a diet rich with fruits and vegetables, exercising regularly, and maintaining a healthy weight. These beliefs thus appear to have troubling consequences for broader efforts to reduce the rate of cancer in the U.S. through primary prevention.

In many ways, these feelings are understandable – it IS confusing. Cancer is not a single disease, but hundreds of them affecting different organs in the body, with different causes, different tests to screen for them, different treatments, and different prognoses. By some estimates, half of all cancer cases have an unknown cause. Cancer research moves slowly and incrementally, but increasingly publicly – one study might suggest that coffee causes cancer, while another points to its preventive potential. Science requires a back-and-forth between scientists as they sort out what findings hold up and which ones prove only preliminary. This process is absolutely necessary, but can offer a false sense of hope or opportunity if appropriate caveats aren’t offered in early stages of this work, or if preliminary results are publicized widely through the media.

Following a study that found serious gaps in advance care planning for decisions about serious illness, Robert Wood Johnson Foundation/U.S. Department of Veterans Affairs Physician Faculty Scholar Rebecca L. Sudore, MD, has launched an online resource to help patients prepare to make complex medical decisions. Sudore, who led the study, saw a need for an easy-to-use tool , beyond an advance directive form, that could help prepare patients to identify what is important to them in life, communicate their wishes with others, and make informed medical decisions.

PrepareForYourCare.org is a free, easy-to-use online resource that guides patients through all the steps of advance care planning, and incorporates content directly from Sudore’s study. It is written at a fifth-grade reading level, includes voice-overs of all text and large fonts for the visually impaired and closed captioning for the hearing impaired.

More importantly, PREPARE shows people, through videos and a step-by-step process, how to have the conversation and make informed medical decisions.

Americans’ visits to physicians had become less frequent in recent years, at least in part because of patients’ financial concerns.  But they’re apparently beginning to pick up again. American Medical News reports that recent data from insurers, consultants and analysts shows physician visit volume has risen, and that patients are reporting fewer problems affording care.

Among the encouraging data points:

- A June research note from analyst Charles Boorady of Citigroup Investment Research shows physician visit volume rose by 4.8 percent over the second quarter of 2012. The number is good news on its own, but the trend line it represents may be just as telling: The comparable quarter of 2011 saw an 8.9 percent decline.
- In a March Gallup poll, 80.9 percent of respondents said they had no problem affording needed health care. Though this number is slightly lower than in February 2011, it is up from the 77.7 percent who responded similarly when the recession hit in late 2008.
- Data from Truven Health Analytics, formerly Thomson Reuters Healthcare, finds that visits to family doctors, internists, ob-gyns and pediatricians rose in May and June.

Though an easing of financial pressures could be behind the rising number of patient visits to physicians’ offices, the American Medical News story notes that some experts think the Affordable Care Act may also be playing a part: Now that many preventive services are covered free of charge, more patients may be seeking out these services.

What do you think? What’s behind the trend in increased physician visits? Is it due to patients’ finances, health reform, both or neither? Register below to leave a comment.

Read the American Medical News story.
Read the RWJF Human Capital Blog’s previous coverage of declines in physician visits here and here.

By Ryan Greysen, MD, MHS, an alumnus of the Robert Wood Johnson Foundation Clinical Scholars program and assistant clinical professor of medicine at the University of California, San Francisco

It seems commonplace today to hear of someone who’s done something online that they wish they hadn’t. Social media use has skyrocketed, and the Internet has pervaded our everyday lives, both personally and professionally. In 2009, my colleagues and I began thinking about this online content and how medical students might be using—or misusing—social media. We were among the first to look at this topic, and we focused on medical students because we assumed they were more frequent users of social media.

But while doing research for a perspective piece where we described “online professionalism” and the role of social media as a “mirror” of physician’s values to the public, we found a few reported incidents of licensed physicians getting into trouble with licensing boards. That begged the question: was this just an issue among medical trainees, or was this a trend among licensed physicians as well?

We approached the Federation of State Medical Boards (FSMB) to see if they would partner with us in a study of all medical boards to see how this issue was playing out on a national scale. We surveyed the 68 medical boards across the U.S. to assess violations of online professionalism and actions taken by state medical boards and published our findings in the Journal of the American Medical Association.

The majority of respondents at medical boards we surveyed (92 percent) said at least one online violation of professionalism had ever been reported. The most common problems were inappropriate patient communication online, such as sexual misconduct (69 percent); use of the Internet for inappropriate practice, including Internet prescribing without an established clinical relationship (63 percent); and doctors misrepresenting their credentials (60 percent).

Dominick L. Frosch, PhD, is an alumnus of the Robert Wood Johnson Foundation (RWJF) Health & Society Scholars program, and the recipient of an RWJF Investigator Award in Health Policy Research. He is an associate investigator at the Department of Health Services Research at the Palo Alto Medical Foundation Research Institute, and associate professor of medicine at the University of California, Los Angeles. Frosch recently led a study, published in Health Affairs, which examined the reasons patients are reluctant to engage in shared decision making. This post is part of a series on the RWJF Health & Society Scholars program, running in conjunction with the program’s tenth anniversary. The RWJF Health & Society Scholars program is designed to build the nation’s capacity for research, leadership and policy change to address the multiple determinants of population health.

Human Capital Blog: Why did you decide to look at this issue?

Dominick Frosch: The role of patients is really changing and, especially over the last decade, we’ve seen a growing emphasis on patient participation in clinical decision making. It’s especially prominent in what we call preference-sensitive care, where patients have multiple potential options for treatment, but the evidence doesn’t identify a clear, superior choice. Making a decision in these cases involves considering the trade-offs between benefits and risks. There’s growing emphasis that patients should have a role to play in these preference-sensitive situations because they have to live with the outcomes of the care they receive.

Until now, we have implicitly assumed that providing patients with information is sufficient to facilitate shared decision making. In reality we know quite little about how patients perceive the communication tasks that are necessary for shared decision making to happen in a clinical consultation, and our objective with this study was to develop a better understanding of that.

The Robert Wood Johnson Foundation (RWJF), NPR and the Harvard School of Public Health commissioned a poll to better understand Americans’ experiences and attitudes related to the cost and quality of their medical care. Released on May 21st, Sick in America found that many Americans who experienced a serious illness or injury in the past 12 months are concerned about the financial costs of medical care, and struggle to ensure that their care is appropriate. Nearly nine in ten respondents (87 percent) think the cost of care is a serious problem for the country.

In addition to surveying the public, the poll examined sick Americans’ experiences and perceptions. “Sick Americans” (27 percent of adults surveyed) were defined as those who said they had a serious illness, medical condition, injury, or disability requiring a lot of medical care or who had been hospitalized overnight in the past 12 months. A quarter of sick Americans said a doctor, nurse, or other health professional did not provide all the needed information about their treatment or prescriptions – or they had to see multiple medical professionals, and no single doctor understood or kept track of all the different aspects of their medical issues and treatments (23 percent). Three in 10 hospitalized Americans said there was poor communication among the doctors, nurses, and other health care professionals involved in their care.

In addition, 34 percent of patients who were hospitalized for at least one night in the past year said “nurses weren’t available when needed or didn't respond quickly to requests for help.”

To learn more, NPR published a call-out to nurses on its Facebook page. It was a non-scientific way to gather information, NPR notes, but the response from nurses was significant. “We received hundreds of responses and read them all: piles of stories about nurses feeling overworked, getting no breaks, no lunches and barely enough time to go to the bathroom. Even worse, many nurses say breaks and lunchtimes are figured into their salaries and deducted, whether they take them or not,” NPR reported on Morning Edition.

The poll also found that consumers see a shortage of nurses and physicians as one of the problems with the quality of health care in the country today. Of the one-third of total respondents who were asked about major reasons for quality problem, 35 percent identified “not enough doctors or nurses in hospitals or medical offices” as a major problem.

Learn more about the Sick in America poll.

Listen to the story on NPR.

Around the country, print, broadcast and online media outlets are covering the groundbreaking work of Robert Wood Johnson Foundation (RWJF) scholars, fellows and grantees. Some recent examples:

Although losing a sense of smell is associated with the development of Alzheimer’s disease, there is not enough evidence that olfactory identification tests (smell tests) can be a predictor for developing the disease, according to a study co-authored by RWJF/US Department of Veterans Affairs Clinical Scholar Gordon Sun, MD. Medical News Today, WebMD, and BrainPhysics.com are among the outlets to report on the findings.

Patients may not be fully participating in decisions about their health—holding back questions or avoiding challenging their physicians—for fear of being labeled “difficult,” a study led by RWJF Health & Society Scholars alumnus Dominick L. Frosch, PhD, finds. "What's interesting to us is these were mostly Caucasian, highly educated, well-to-do people, and they're talking about these difficulties," Frosch told the San Francisco Chronicle. “It’s difficult to imagine this is easier for people in a less advantageous social position.” Fierce Healthcare also reported on the findings.

The Federation of State Medical Boards recently adopted new guidelines for physicians about social media use and social networking, on the heels of a study led by Clinical Scholar Ryan Greysen, MD, MHS, that finds an increase in reports of doctors not adhering to professional standards online. “Like everyone else, doctors sometimes stumble in their online behaviors and make mistakes in judgment about content they post,” Greysen told Slate. “They think they’re doing nothing wrong but, unfortunately, the disciplinary responses can be a big deal.” Read a press release about the new guidelines. Read more about Greysen’s study.

RWJF Harold Amos Medical Faculty Development Program alumnus Yonas E. Geda, MD, continues to receive media coverage for her study that finds seniors can reduce their risk of developing mild cognitive impairment through a combination of moderate exercise and such mentally stimulating activities as using a computer. Among the outlets to report on the findings: CBS News, MedPage Today [free subscription], Health.com and Consumer Affairs.

Americans visited their doctors less often and took fewer medications in 2011, according to a study released this month by the IMS Institute for Healthcare Informatics. The likely cause: financial pressures.

“The Use of Medicines in the United States: Review of 2011” finds the total number of physician office visits declined 4.7 percent in 2011, the fourth decline in five years. Non-emergency room hospital admissions also declined slightly (by 0.1 percent), but emergency room admissions increased (7.4 percent), “the possible result of continued high levels of uninsured patients associated with long-term unemployment,” the study says.

It also finds changes in medication utilization. While seniors remained the largest users of medications, their use of retail prescriptions fell by 3.1 percent. Young people, age 19 to25, however, increased their prescription use by 2 percent. They were the only age group to increase their drug utilization in 2011, perhaps as a result of the provision of the Affordable Care Act that allows them to stay on their parents’ health insurance until age 26.

The drop in per-capita use of prescriptions may be due in part to combination pills and 90-day, rather than 30-day, prescriptions, American Medical News reports, but “researchers believe strained finances are the most significant factor.”

“The end of the recession has not delivered recovery to many people,” Michael Kleinrock, director of research development at IMS and the primary author of the study, told American Medical News. “Patients are spreading out repeat visits and self-medicating with over-the-counter drugs.”

Read the study.

Read the American Medical News story.

An appendectomy in California could cost anywhere from $1,500 to more than $180,000, even at the same hospital or within the same county, according to a study led by RWJF Physician Faculty Scholar Renee Y. Hsia, MD, MSc. The study, published this week in the Archives of Internal Medicine, found wide variations in fees for the routine procedure, about one-third of which could not be explained even after reviewing all the cases and accounting for individual health variations.

“We expected to see variations of two or three times the amount, but this is ridiculous,” Hsia told the New York Times. “There’s no rhyme or reason for how patients are charged or how hospitals come up with charges… There’s no other industry where you get charged 100 times the same amount, or 121 times, for the same product.”

Among the other media outlets to report on the study’s findings: ABC News, ABC News Radio, The Associated Press/Washington Post, CBS News and Fox News.

Read the study.

See the stories that ran on ABC World News and CBS Evening News.

Read a post Hsia wrote for the RWJF Human Capital Blog about ambulance diversion and emergency department crowding.