News Roundup: Perception Gaps and Progress in Personalized Medicine

With so many developments at the intersection of genomics and the law, there is often a variety of interesting stories that, for one reason or another, don’t find their way into a full-length posting on the Genomics Law Report. In this post we recap several recent key developments and, at bottom, round up all of the recent tweets from @genomicslawyer.

Personalized Medicine’s Perception Gaps. A new report released this week by the biopharmaceuticals company Quintiles (pdf) examines the perspectives of four key stakeholder groups – biopharma executives (n=200), managed care executives (n=153), physicians (n=503) and patients (n=1,000) – across a wide range of personalized medicine issues.

The report contains a number of interesting statistical nuggets about how these groups perceive their strengths, weaknesses and future role in the advancement of personalized medicine. These include the following:

Perhaps the most surprising finding of all is that patients appear to be largely unfamiliar with the entire concept of personalized medicine. Only 24% of patients surveyed had previously even heard of “personalized medicine,” indicating that healthcare companies and providers alike have considerable work remaining in order to bring personalized medicine into the mainstream.

The report concludes that there is “considerable misalignment among healthcare stakeholders on various aspects of the healthcare universe.” According to the report, physicians are frustrated by payers, payers are frustrated by a complex and ill-suited regulatory regime, biopharma executives are torn between maximizing health outcomes and maximizing value to shareholders and patients are “viewed by all groups as not doing enough to improve their own healthcare.”

Clinical Trial Innovations. One major barrier to the development of increasingly personalized therapies is clinical trial recruitment. The more personalized the therapeutic or diagnostic tool in development, the more difficult it is to locate patients who satisfy the trial’s enrollment criteria.

Enter PatientsLikeMe, the patient-driven health platform, which this week announced a new feature to help match patients with clinical trials more effectively. PatientsLikeMe’s new tool will query a government database of ongoing clinical trials ( and “automatically match up members of the website with every clinical trial they may be eligible for based on their conditions and location.”

Also this week, pharmaceutical giant Pfizer announced a new form of “virtual” clinical trial which, according to NatureNews, will lower barriers to clinical trial enrollment by allowing “participants to receive medication, video-conference with clinicians, and report symptoms in the comfort of their own home.”

The announcements from Pfizer and PatientsLikeMe are just the latest in a serious of innovations seeking to leverage digital and social media tools to encourage more widespread and efficient personalized medicine research.

Personalized Medicine and Cancer. Despite the many challenges it faces – from scientific complexity to regulatory, reimbursement and intellectual property regimes ill-equipped to accommodate innovation – the present and future of personalized medicine was on display this past week as thousands gathered in Chicago for the annual American Society of Clinical Oncology (ASCO) meeting (see previous news).

To help us keep up with the latest developments in oncology, Luke Timmerman of Xconomy offered a detailed wrap-up of the major developments announced at ASCO by U.S. companies. In addition, at the Consumer Genetics Conference in Boston this past week, Illumina CEO Jay Flatley announced cuts in the company’s pricing for individual whole-genome sequencing, including an attractive $10,000 price point for tumor-normal pair sequencing of cancer patients. Finally, Matthew Herper of Forbes elegantly recapped outgoing ASCO president George Sledge’s big-picture perspective on “cancer’s new era of promise and chaos.”

Whatever the challenges, it remains clear that opportunities abound for personalized medicine companies and investors. A new survey from PwC’s Health Research Institute found that consumers are willing to spend approximately $13.6 billion per year of their own money on healthcare services. It found further that more than three-quarters (76%) of the Fortune 50 is comprised of either healthcare companies or companies with a health division.

Roundup of tweets from the intersection of genomics, personalized medicine and the law:

Filed under: General Interest, Genetic Testing/Screening, Genomic Sequencing, Genomics & Medicine, Genomics & Society, Industry News
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