When it comes to medical treatment, the research community's agenda doesn't always match up with patients' desires. For instance, when people suffering from knee osteoarthritis were asked in 1999 what research was needed, they said they wanted more information on interventions such as braces, exercise regimens and pain management strategies. Yet most research at the time focused on drug and surgical treatments (Lancet 355, 2037–2040, 2000).

The Oxford-based James Lind Alliance was established in 2004 to help bridge such gaps. The nonprofit, funded by Britain's Department of Health and Medical Research Council, brings patients and clinicians together to identify top research priorities for a specific condition. On 11 May, the Alliance launched its online guidebook, intended to enable patients and clinicians to help set the medical research agenda (http://www.jlaguidebook.org/). The step-by-step manual explains how to establish partnerships among patient organizations and clinician groups, identify and prioritize unanswered questions in an area of science, and take the findings to funders.

“It strikes me as perverse that patients and clinicians aren't naturally the ones who determine priorities for medical research funding,” says Lester Firkins, co-founder of the James Lind Alliance. “With the guidebook, we're giving people who want to try and set priorities an easy, structured way to do it.”

“It's hard to imagine anyone in the world thinking this isn't a good idea,” says Martin Burton, an ear, nose and throat (ENT) surgeon and president of the British Society for Academic Otolaryngology. The ENT community is forming a balance disorders partnership, the first of several disorders it plans to take on. “We're very interested in doing good, quality research for the benefit of patients, and the guidebook will be immensely helpful with that.”

The do-it-yourself guide draws from the Alliance's experience working with patient and clinician organizations. In the past, for example, JLA helped walk the patient advocacy group Asthma UK and the research-oriented British Thoracic Society through the process of priority setting. Now, groups who want to form such partnerships without the JLA's direct assistance have the option of using the guidebook as they collaborate on priority setting. The guidebook, which took 18 months to write, includes questionnaire templates, draft agendas and case studies of different partnerships.

“Ideally, an uncertainty that wouldn't have come to light otherwise goes forward, is researched and makes a real difference to the patients and to the people who treat them,” says Katherine Cowan, the guidebook author. “The guidebook is our online resource for how you do that.”

“The guidebook is brilliant—I wish we'd had it a year and a half ago when we started the priority-setting process,” says Emma Halls of the Prostate Cancer Research Foundation, which has gathered 163 research-oriented questions from clinicians and individuals with prostate cancer. Patients and clinicians will vote in September on the final ten questions, which will help guide the foundation's funding. The findings will also be entered in a national database to help direct future federally funded research. “As a charity completely funded by donors, it seemed really natural to ask clinicians and patients for their input. But it's really complicated,” says Halls. “The James Lind Alliance has made it so much easier to manage the process.”