The importance of educational materials for Americans to learn about their healthcare is essential to providing effective treatment to all patients. As a result, recent trends for patient online educational efforts are being helped tremendously by industry, according to a recent New York Times article. One example of this breakthrough with industry is Dr. Amy Farber, founder of LAM Treatment Alliance, and an inspiration to many patients.
In 2005, Dr. Farber developed a rare and fatal disease called LAM, short for lymphangioleiomyomatosis. Consequently, she quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.” The main way she did this, which has been the case for most research and cures throughout history, was through collaboration with industry.
Through her vision of finding ways to treat LAM “she became determined to increase and speed up research into her illness with the hope of finding a cure in her lifetime.” Unfortunately, as Dr. Farber began her journey for a cure, she encountered numerous obstacles, and she was forced to navigate through “a cumbersome research system fraught with obstacles to collaboration and progress — one that failed to focus on patient needs.”
Accordingly, Dr. Farber went to “Dr. George Demetri, a member of her organization’s advisory board, and a professor and cancer researcher at .” Working with Dr. Demetri, they formulated a goal of using the “Internet to connect patients around the globe and mine their collective wisdom for new insights into the rare cancers he studies.”
Next, Dr. Farber went to Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory. With Mr. Moss, they began “a new collaboration between her group and the Media Lab: LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.”
From this experience Dr. Farber asserted that “online communities have the potential to transform medical research — especially into rare diseases like hers that lack the number of patients needed for large-scale studies and rarely attract research financing from the drug industry.” Moreover, drug and device companies take up such endeavors because industry notices these inspired movements driven by patients, and they see how the lack of interest, funding and research affects the lives of the people who live with these ailments each day.
Consequently, the attention that industry gives such online projects allows crucial data to be collected from “patients’ everyday experiences in living with an illness.” According to Moss, “those data could generate new hypotheses and avenues for research,” that would result in better outcomes for patients.
This then translates into industry helping these online communities exist by collecting “patient data and genetic information online to use in recruiting patients for clinical trials, conducting research internally or to sell to drug and biotechnology companies.” In other words, industry is giving patients the chance to find ways to cure their illnesses and offer them treatments.
Interestingly, because these online communities use “methods that are far cheaper and faster than traditional research,” industry can focus on the efficiency and effectiveness of their clinical trials to get the best results possible.
Seemingly, while some critics are concerned about privacy, sharing information online, and who would have control over the data, these issues arise in all forms of research. Instead of focusing on these negatives however, researchers and industry are doing what they always do best: put the interests of patients first by making sure these concerns are addressed in every step.
Other critics are concerned about the quality of self-reported data online, versus face-to-face interviews. One solution that is obvious to this problem is the ability for patients to answer surveys to medical questions on camera. Still, the survey data is initially to collect groups of patients to identify: the online patient data will not replace experimental controlled trials, according to Ian Eslick, the M.I.T. doctoral student developing the LAMsight project. Furthermore, “the data generated by the project will be used mainly for exploratory analysis and hypothesis generation.”
Examples of already existing online companies include the “Belgian pharmaceutical company UCB who announced a partnership to build an online epilepsy community with PatientsLikeMe.” Ideas from this project have already shown that experiments must measure how drugs affect patients’ lives, and doing so online is the best option since that data is “slow and expensive to collect.” The company 23andMe, also started a program to help contribute genetic data toward research into the disease of their choice.
Ultimately, the use of these databases are essential to future research and collaboration with industry because they help “recruit huge numbers of patients quickly, said Dr. Robert Cooke-Deegan, director of the Center for Genome Ethics, Law & Policy at Duke University’s Institute from Genome Sciences and Policy.” Dr. Farber’s push for new research has not only given her hope, but makes “each healthy day with her husband and young daughter a blessing.”
Recently Dr. Farber presented at the charter meeting of ACRE for a link to her presentation online: LAM Treatment Alliance