- My Research Is Their Business, but I’m Not Their Business- : Patient and Clinician Perspectives on Commercialization of Precision Oncology Data

BackgroundGenetic sequencing and precision oncology have supported clinical breakthroughs but depend upon access to vast arrays of research specimens and data. One way for academic medical centers to fund such infrastructure and research is - commercialization- of access to specimens and data to industry. Here we explore patient and clinician perspectives regarding cancer specimen and data commercialization with the goal of improving such processes in the future.Materials and MethodsThis qualitative analysis was embedded within a prospective precision oncology sequencing study of adults with head and neck cancer. Via semistructured dyadic interviews with patients with cancer and their doctors, we assessed understanding and concerns regarding potential commercialization, opinions regarding investment of profits, and perspectives regarding the return of information directly to participants from industry.ResultsSeveral patient- and clinician- participants did not understand that the consent form already permitted commercialization of patient genetic data and expressed concerns regarding who would profit from the data, how profits would be used, and privacy and access. Patients were generally more comfortable with commercialization than clinicians. Many patients and clinicians were comfortable with investing profits back into research, but clinicians were more interested in investment in head and neck cancer research specifically. Patients generally supported potential return- of- results from a private entity, but their clinicians were more skeptical.ConclusionOur results illustrate the limitations of mandatory disclosures in the informed consent process. The voices of both patients and their doctors are critical to mitigate violations of privacy and a degradation of trust as stakeholders negotiate the terms of academic and commercial engagement.Implications for PracticeFurther education is needed regarding how and why specimens and data in precision oncology research may be commercialized for both patients and providers alike. This process will require increased transparency, comprehension, and engagement of involved stakeholders.To better understand perspectives on cancer specimen and data commercialization, interviews of patients participating in a prospective precision medicine cancer sequencing study were conducted, along with corresponding interviews with the patients’ referring doctors. This article reports the results and aims to improve the consent process for biospecimen and health data sharing and commercialization.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/156136/2/onco13272.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/156136/1/onco13272_am.pd

The Status of Health Information Delivery in the United States: The Role of Libraries in the Complex Health Care Environment

published or submitted for publicatio

Dietary supplement use in ambulatory cancer patients: a survey on prevalence, motivation and attitudes

Purpose: Patients with cancer often believe dietary supplements (DS) such as micronutrients and botanical products to be health supporting and non-toxic despite growing concerns regarding potential pharmacological interactions. Studies on the prevalence of DS use among patients with cancer are heterogeneous and mainly conducted at university-based cancer centers. This survey focused on a particular cancer patient group treated in an ambulatory setting without regular access to professional nutritional counselling. Methods: Patients with a history of cancer or hematological malignancy were included in this survey. A self-reported questionnaire was used to evaluate the different aspects of DS use, changes in dietary habits and patients' demographic characteristics. Results: Almost every second patient reported using DS (47.2%). Women (56.3%), patients with an academic degree (56.0%) and non-smokers (84.8%) were more inclined to use DS. Along with magnesium (16.6%), calcium (14.3%), multivitamins (12.0%) and vitamin C (9.4%), use of herbal supplements (12.6%) was common. Women (84.8% vs. 74.9% of men, p = 65 y, p = 0.002) sought dietary advice more often. Support of the immune system was the main reason for DS use (26.4%) and a relevant number of patients (49.6%) reported to have changed their dietary habits following cancer diagnosis. Conclusion: DS use is common among patients with cancer treated in an ambulatory setting. This finding should encourage oncologists to implement detailed questioning about DS use and dietary habits to prevent potential interactions and offer substantial advice

The New Role of Academia in Drug Development

Recommends ways for government, nonprofits, and academic institutions to work with the private sector to develop drugs and bring them to market more efficiently, including establishing models for intellectual property and technology transfer processes

Representativeness of breast cancer cases in an integrated health care delivery system.

BackgroundIntegrated health care delivery systems, with their comprehensive and integrated electronic medical records (EMR), are well-poised to conduct research that leverages the detailed clinical data within the EMRs. However, information regarding the representativeness of these clinical populations is limited, and thus the generalizability of research findings is uncertain.MethodsUsing data from the population-based California Cancer Registry, we compared age-adjusted distributions of patient and neighborhood characteristics for three groups of breast cancer patients: 1) those diagnosed within Kaiser Permanente Northern California (KPNC), 2) non-KPNC patients from NCI-designated cancer centers, and 3) those from all other hospitals.ResultsKPNC patients represented 32 % (N = 36,109); cancer center patients represented 7 % (N = 7805); and all other hospitals represented 61 % (N = 68,330) of the total breast cancer patients from this geographic area during 1996-2009. Compared with cases from all other hospitals, KPNC had slightly fewer non-Hispanic Whites (70.6 % versus 74.4 %) but more Blacks (8.1 % versus 5.0 %), slightly more patients in the 50-69 age range and fewer in the younger and older age groups, a slightly lower proportion of in situ but higher proportion of stage I disease (41.6 % versus 38.9 %), were slightly less likely to reside in the lowest (4.2 % versus 6.5 %) and highest (36.2 % versus 39.0 %) socioeconomic status neighborhoods, and more likely to live in suburban metropolitan areas and neighborhoods with more racial/ethnic minorities. Cancer center patients differed substantially from patients from KPNC and all other hospitals on all characteristics assessed. All differences were statistically significant (p < .001).ConclusionsAlthough much of clinical research discoveries are based in academic medical centers, patients from large, integrated medical centers are likely more representative of the underlying population, providing support for the generalizability of cancer research based on electronic data from these centers

BUSM Dean's report

Reports from the Office of the Dean, Boston University School of Medicine