Enhancing Biospecimen Knowledge Among Health Care Providers and Representatives From Community Organizations.

In a personalized medicine environment, it is necessary to have access to a range of biospecimens to establish optimal plans for disease diagnosis and treatment for individual patients. Cancer research is especially dependent on biospecimens for determining ideal personalized treatment for patients. Unfortunately, the vast majority of biospecimens are collected from non-Hispanic White individuals; thus, minority representation is lacking. This has negative implications for comprehensive cancer treatment. The Geographic Management of Cancer Health Disparities Program (GMaP) Region 6 implemented a series of biospecimen education seminars adapted from the Biospecimen and Biobanking module of an existing Cancer Education and Training Program. Regional GMaP partners participated in a train-the-trainer webinar to familiarize themselves with the training materials. Participants trained by the trainers completed pre- and posttests to document changes in awareness, knowledge, and intention. Nine biospecimen education seminars were offered in 2013; 255 health care professionals and representatives from community organizations attended. Participants demonstrated a significant increase in knowledge, intention to donate samples, and intention to talk to patients about biospecimen sample donation. Representatives from community organizations had more improvement on knowledge scores than health care providers. Participation in a well-designed biospecimen education program may ameliorate some of the distrust of biomedical research experienced by racial/ethnic minorities and, in turn, increase needed minority representation in biospecimen collection.

[Perception by cancer patients of biomedical research in the era of large-scale biobanking]. / La recherche biomédicale à l'ère des tumorothèques - Point de vue des patients atteints de cancer.

In French hospitals, patients are increasingly asked to participate in research, particularly in oncology where the development of research is stimulated at a national level (plan Cancer). This article express our thoughts based on the literature about the perception by cancer patients of research activities developed in the care centre where they are treated. We focus mainly on the consent for biobanking in a context in which cancer patients are routinely requested to donate tumour samples for research. This article presents the results of a survey among patients treated in a comprehensive cancer centre. The available literature shows that patients have an overall positive image of medical research and of the existence of research activities intertwined with medical care. Patients are globally expressing a wish for more proposals to participate in research in collaboration with scientific teams.

Differing perspectives of sputum and its expectoration: a qualitative study involving patients with cystic fibrosis and physiotherapists.

Sputum specimens are frequently requested from individuals with chronic suppurative conditions such as cystic fibrosis (CF). For a proportion of people, expectorating sputum can be difficult. Our goal was to explore the potential barriers and facilitators to expectorating sputum from the perspective of those with CF and physiotherapists involved in their care. Eighteen interviews were conducted with people who have CF and three focus groups with physiotherapists. Data were recorded, transcribed verbatim, and analysed using a framework approach. Variation emerged in perceptions between physiotherapists and people with CF in terms of sputum's impact on everyday life and the importance of its role in managing the condition. These differences were reflected in the following themes: (1) seepage of bodily boundaries, (2) discrediting nature of sputum, (3) embodied representation of chronic illness, and (4) non-production as a decisional balance. Differing views between participants could have arisen from the personal nature of sputum for people with CF, whilst physiotherapists may see sputum specimens as a necessary part of holistic management of this condition. Education could assist individuals in overcoming some of the barriers associated with expectorating, but physiotherapists may have to individualise the collection of sputum, recognising not everyone will be at ease with this procedure.