Patients take on expanded role

Drug companies urged to respond

By Robert Weisman
Globe Staff / March 22, 2011

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CAMBRIDGE — Patient activists are stepping up their role in health care and drug development, funding research, helping companies set priorities, and banding together over the Internet to share their experiences with everything from doctors to therapeutics.

The emerging “participatory medicine’’ trend, which will have a profound impact on health care providers and the biomedical industry, was a focus of yesterday’s opening sessions at the Massachusetts Biotechnology Council’s annual meeting. About 350 people attended the first day of the council’s two-day gathering at the Royal Sonesta Hotel.

“We see an evolution bordering on a revolution in health care,’’ said Harry Glorikian, managing partner of Cambridge life sciences consulting firm Scientia Advisors.

“The patients are becoming much more involved in their own treatment. If you’re not going to be the squeaky wheel, you’re not going to get the attention you need.’’

Among the factors empowering patients are the move towards personalized medicine, customizing health care based on genetic variability; a growing emphasis on “wellness’’ in an aging population through disease prevention; and the rise of social media enabling patients and doctors to form online communities.

Unlike more open forums such as Facebook, many of the new patient and physician communities are gated, permitting candid dialogue within peer networks. For example, the drug Tysabri, made by Weston-based Biogen Idec Inc., is a popular topic among multiple sclerosis patients who register to take part in discussions on the Cambridge-based website Patients Like Me. While it is one of the most effective treatments for reducing MS relapse rates, it can cause a rare brain infection known as PML, or progressive multifocal leukoencephalopathy, in about 1 of 1,000 patients.

Noting that Biogen Idec has developed a test to screen for the infection, Benjamin Heywood, president of Patients Like Me, said, “Patients are definitely talking about the risk-reward equation.’’

Heywood said patients suffering from a variety of diseases and chronic conditions are overcoming what formerly was a stigma of discussing with others the progression of their illnesses and how they respond to different treatments. “People are realizing more and more the incredible value of sharing medical information,’’ he said.

Doctors, too, have been sharing diagnoses and treatments with colleagues across the country or overseas through gated physicians-only websites like Sermo, also based in Cambridge. “You can be in St. Louis and be in very active conversation with somebody from San Francisco about how they can provide the best care,’’ said Ashley Serotta, senior membership director for Sermo. Serotta said Sermo and other sites are empowering physicians who feel overwhelmed by administrative bureaucracy.

Beyond sharing medical insights, patient advocacy groups are claiming a larger role in underwriting drug research and development, while working with biotechnology and pharmaceutical companies on setting research priorities, according to Deborah Dunsire, chief executive of Millennium Pharmaceuticals, the Cambridge-based oncology division of Japan’s Takeda Pharmaceutical Co.

Dr. Dennis J. Selkoe, professor of neurological diseases at Harvard Medical School and codirector of the neurology department at Brigham and Women’s Hospital in Boston, said the involvement of patient advocacy groups is becoming more important as the leading source of research funding, the federal government, faces budgetary pressures.

“We think about the research from bench to bedside, with the patient always in mind,’’ said Karin Hehenberger, senior vice president for strategic alliances at the Juvenile Diabetes Research Foundation. “We need to work with companies on capital allocation. We need to partner. This is what we are doing now in an accelerated way.’’

But forging alliances with multiple companies working on competing treatments can present challenges, Hehenberger and other speakers said. Patient advocacy groups must be careful not to endorse drugs in clinical trial before they have been approved by regulators. And they must put the interests of patients above those of industry partners.

“If we find that one therapy is better than another, we will have to negotiate how we talk about that,’’ said Timothy Coetzee, chief research officer of the National Multiple Sclerosis Society. “We are caught in between camps.’’

Robert Weisman can be reached at