Public Ahead of Providers in Support for Personalized Medicine

Levels of public support for personalized medicine (PM) are seemingly outpacing organizational plans to implement PM-based clinical strategies, based on the results of two recently released surveys.

Public support for personalized medicine research is high and the majority would be willing to participate in federal research, if asked, according to a study published Aug. 17 in PLoS ONE. The survey was conducted as part of an early effort to understand the preferences of potential participants of the White House's Precision Medicine Initiative (PMI). The survey results were incorporated into recommendations for the design of the study.

The PMI Cohort Program aims to enroll 1 million U.S. participants willing to share long-term, prospective data about their health and lifestyle, including genetic information, to build a national resource for researchers. To be useful, data must be collected from a broad base of participants. The National Institutes of Health (NIH) anticipates launching initial phases of the cohort later this year. The survey was conducted to gauge support for PMI, to measure acceptability of design features, and to identify public concerns. Incorporating these findings into the study's design, and other participant engagement efforts, are intended to help build an inclusive and trusting cohort.

Survey participants answered a 44-question online survey (May to June 2015) to assess how different consent models affect participants' willingness to participate and share data. More than 2,600 participants, representative of the U.S. population, were randomized to one of eight different consent scenarios. The scenarios varied by the structure of consent (broad, study by study, menu, or dynamic consent) and the presence or absence of access to a website where participants would be able to see what studies are going on, which studies are using their information, and what each study has learned.

Overall, 79 percent of the respondents expressed support for PMI, and 54 percent said they would definitely or probably participate if asked versus 46 percent that stated they would definitely or probably not participate, if asked. These findings were fairly constant across racial and ethnic groups. Only those with less than a high school education showed lower support for PMI (less than 70 percent).

Broad consent received less support when modeled alone, but showed similar support if broad consent was coupled with availability of a website that displays how samples and data are being used. People were most likely to report willingness to share personal data with researchers at the NIH (79 percent) and U.S. academic researchers (71 percent). Respondents were more reluctant to share data with pharmaceutical company researchers (52 percent) or university researchers in other countries (39 percent).

Respondents expressed high willingness to share multiple types of personal data, including: blood samples (73 percent); genetic information (76 percent); family medical history (77 percent); soil and water samples from their home (83 percent); and data on their lifestyle, diet, and exercise (84 percent). By contrast, only 43 percent of those with social media accounts said they would share social media information. People who said they supported the study, but would not participate were more likely to be concerned about privacy and the amount of time the study would take.

The greatest incentive for participation was information about their health (90 percent). Specifically, they wanted lab results, such as cholesterol and blood sugar levels (75 percent), genetic information (75 percent), and a copy of their medical records (68 percent).

"Maximizing information shared with research participants will be a key challenge of the PMI," write the researchers, led by David Kaufman, from the National Human Genome Research Institute. "The return of information may also benefit research, encouraging participants to stay engaged and enrolled, and to take part in other research studies based on their results."

Despite public opinion supporting PM research, the majority of health care organizations say they are not ready to invest in PM, yet, and current adoption is "limited," according to a new survey from HIMSS Analytics, released Aug. 30.

Representatives from137 hospitals were surveyed online. Respondents represented multi-hospital systems (36 percent), stand-alone hospitals (29 percent), academic medical centers (13 percent), and integrated delivery networks (10 percent). More than 60 percent of respondents were from hospitals with 250 or more beds and approximately 30 percent represented hospitals with more than 500 beds.

Less than one-third of respondents (29 percent) indicated their organizations conduct PM. PM programs are in place at larger, research-based organizations such as academic medical centers (35 percent), multi-hospital health systems (25 percent), and organization's with over 500 beds (41 percent). Of those using PM, 80 percent do so for cancer, followed by 38 percent for neurology, 31 percent prenatal screening, and 28 percent cardiology. HIMSS Analytics noted that the federal Precision Medicine Initiative and its associated funding is among the reasons that the focus has been on cancer.

More than 60 percent of respondents indicate the largest challenge to precision medicine is the integration of clinical data systems and clinical and genomic data. They are being held back by limitations in funding, technology, and expertise. As an alternative, 26 percent of respondents said they performed precision medicine through the use of third party laboratories, while a third used a combination of inhouse and third-party services.

Finally, many organizations have uncertain plans regarding the future of their precision medicine initiatives. Nearly 43 percent said they had yet to develop a concrete strategy regarding their patients and the use of precision medicine. Another 21.4 percent were unsure about the strategy they would develop. Only 14.3 percent said they planned to develop a comprehensive marketing campaign to tout their precision medicine initiatives.

Takeaway: Public support for PM may be outpacing actual implementation in the clinical setting, although public willingness to participate in PM research may accelerate future adoption.