Many families think hospice care was great, came too late

Excerpts from the Globe's blog on the Boston-area medical community.

Brown University researchers report in the Journal of Pain and Symptom Management that 11.4 percent of the more than 100,000 respondents thought their relatives received hospice care too late. In Massachusetts, the figure was 12.6 percent. Vermont had the lowest rate, at 7.8 percent, and South Carolina had the highest, 15 percent.

Among people whose relatives had only two days of hospice care, only 24 percent said that was too late, lead author Dr. Joan M. Teno said.

"I think this relates to how well hospice programs rally the troops to make everything happen," she said. "The entire hospice team mobilizes very quickly. They go in there and they do a very intensive intervention for the last 24 or 48 hours."

Test subjects: Check the fine print before signing on

Sometimes the arms-length distance between academic researchers and the pharmaceutical companies that provide drugs for their clinical trials can lead to problems, Harvard scientists wrote in last week's New England Journal of Medicine.

Michelle M. Mello of the Harvard School of Public Health and Dr. Steven Joffe of the Dana-Farber Cancer Institute explored a case in which research subjects sued the drug company Amgen when a Parkinson's therapy was no longer available to them, even though they had signed contracts promising continued access to the treatment. The study was stopped early because of concerns that the drug was neither safe nor effective, but some subjects wanted to keep taking it. Amgen said it didn't have to provide the drug, and the court agreed.

Much of the problem "can be avoided through more careful drafting of contracts," the authors wrote.

MGH doc lobbies for childhood cancer research

Upset about the limited funding for pediatric cancer research, Dr. Howard Weinstein went to Capitol Hill last week to help lobby for the Childhood Cancer Act of 2007.

"Twenty trials that are ready to be launched will not be activated in the next weeks to months because of the budget," Weinstein, chief of the center for pediatric hematology and oncology at Massachusetts General Hospital, said in an interview from Washington. "It's such a frustrating time because there's an explosion of new drugs that we're really anxious to test in children, but we don't have the funding."

Four years of flat funding for the National Institutes of Health have meant real declines in the money available for research, after medical inflation is taken into account, he said.

The bill asks for $150 million over five years.

Machines need to do a better job of talking to each other

There is no shortage of examples to illustrate the frustrating technological gaps that can put patients' lives at risk, Dr. Julian M. Goldman told a conference on health care technology and safety last week.

Take ventilators to help heart patients breathe before and after a heart/lung bypass machine takes over during surgery. It would help if one machine could tell whether the other was turned on -- or off.

"The challenge is to turn war stories into actionable solutions," Goldman, of Mass. General, said at the conference co-sponsored by the Center for Integration of Medicine and Innovative Technology.

Google taps high-tech local doctor for advisory council

Dr. John D. Halamka is nothing if not connected. The chief information officer at Beth Israel Deaconess Medical Center has a radio frequency identification chip implanted in his body that points to his personal health information. He belongs to a statewide group working to connect medical records electronically. He has championed technology as critical to patient safety at Beth Israel.

Now, he's been appointed to a new Google Health Advisory Council. The search-engine giant's announcement says the 24 experts it has convened -- including diet book author Dr. Dean Ornish and former FDA commissioner Dr. David Kessler -- will "broadly help us better understand the problems consumers and providers face every day and offer feedback on product ideas and development."

The move its causing a bit of a stir: One fear is that patient privacy will be compromised if it goes online.

Clinic for students, community opens at Worcester school

The state's first school-based health center to also serve neighborhood residents will open in August.

The Helen A. Bowditch Health Center in the Elm Park Community School in Worcester will see children during school hours and other community members the rest of the day.

Elm Park Community School enrolls students from one of the poorest, most densely populated neighborhoods in Worcester whose residents have a high risk for asthma, diabetes and cardiovascular disease.

ELIZABETH COONEY