Dataset Information

Attitudes of blood donors to their sample and data donation for biobanking.

ABSTRACT: Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potential blood donors. Using qualitative content analysis, we identified three discussion frameworks that summarise the results. We found that frequent blood donors associated the voluntary act of donation with caring for patients. The blood donation experience was considered to accommodate biobank participation, but also allowed critical observations on the integration of research data collection into blood donation. Research participants identified an important difference between the blood bank and biobank contexts. In the biobank context, the focus shifts from donating blood to patients into donating personal and genetic data for research use. Blood donors' anxiety over data use was balanced with their experience of the trustworthiness of the Blood Service. These experiences indicated that the new biobanking activity could be trusted to a familiar organisation. To build donors' trust, biobanks should invest in their institutional reputation, donor experience and dialogue with donors. These findings can be applied to other institutions that are considering setting up biobanks with broad consent for personal data use.

SUBMITTER: Raivola V

PROVIDER: S-EPMC6871534 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Attitudes of blood donors to their sample and data donation for biobanking.

Raivola Vera V Snell Karoliina K Helén Ilpo I Partanen Jukka J

European journal of human genetics : EJHG 20190530 11

Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data. We organised 61 interviews and 10 group discussions with current and potenti ...[more]

PMID: 31147625

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Project description:ImportanceBlood donation is critical for health care systems, but donor retention remains challenging. Understanding donors' preferences can inform incentive design and improve retention rates.ObjectiveTo identify donor preferences for incentive attributes and their relative importance in promoting blood donation among Chinese donors in Shandong.Design, setting, and participantsThis survey study fielded a discrete choice experiment (DCE) with a dual response design among blood donors, analyzing the responses under forced and unforced choice settings. The study took place from January 1 to April 30, 2022, in 3 cities (Yantai, Jinan, and Heze) representing diverse socioeconomic strata in Shandong, China. Eligible participants were blood donors aged 18 to 60 years who had donated within the preceding 12 months. Participants were recruited using convenience sampling. Data were analyzed from May to June 2022.ExposureRespondents were presented with different blood donation incentive profiles, varying in health examination, blood recipient, honor recognition, travel time, and gift value.Main outcome and measureRespondent preferences for nonmonetary incentive attributes, attribute relative importance, willingness-to-discard values for attribute improvement, and estimated uptake of new incentive profiles.ResultsA total of 650 donors were invited, of which 477 were included for analysis. The respondents were predominately male (308 respondents [64.6%]), aged 18 to 34 years (291 respondents [61.0%]), and had undergraduate degrees or higher (286 respondents [59.9%]). Among the 477 valid respondents, the mean (SD) age was 31.9 (11.2) years. Respondents preferred comprehensive health examination, family members as recipients, central government recognition, 30-minute travel time, and a gift valued at 60 Renminbi (RMB). No significant differences were found between the model results of forced and unforced choice setting. Blood recipient was the most important attribute, followed by health examination and gifts, and then honor and travel time. Respondents were willing to discard RMB 32 (95% CI, 18-46) for an improved health examination and RMB 69 (95% CI, 47-92) for changing the recipient from themselves to family members. Scenario analysis estimated 80.3% (SE, 0.024) of donors would endorse the new incentive profile if the recipient was changed from themselves to family members.Conclusions and relevanceIn this survey study, blood recipient, health examination, and gift value were perceived more important as nonmonetary incentives than travel time and honor recognition. Tailoring incentives according to these preferences may improve donor retention. Further research could help refine and optimize incentive schemes for blood donation promotion.

Project description:BackgroundThe biobank is an extraordinary aid to research and scientific progress. Public involvement in biobanks, necessary for their development, is limited due to inadequate knowledge of biobanking and concerns about sample donation. This study explores the effectiveness of different publicity methods in improving participants' willingness to donate, and assesses public motivations and concerns. It aims to identify an efficient method of improving participants' awareness of biobanking and promoting sample donation.MethodsA structured 20-item questionnaire was formulated to evaluate participants' knowledge of and attitudes toward biobanks and sample donation. In total, 1,500 questionnaires were disseminated to three groups of 500 participants who received, respectively, picture-based promotional material, text-based promotional material, or who attended a biobank-related lecture. Of these, 945 completed questionnaires were received. All the participants completed the questionnaires twice, before and after the corresponding publicity education.ResultsAfter each of the three methods of publicity based on text, pictures and a lecture, respondents' willingness to donate samples was significantly increased (P < 0.001), the lecture being more effective than the other two methods (P = 0.001). Participants with a medical background were more willing to donate biospecimens after publicity than those without medical backgrounds (P < 0.005) but had common motivations for donation including altruism and aiding medical research. The main concern hindering respondents' willingness to donate was the security of personal information.ConclusionDifferent types of biobank-related publicity based on text material, pictorial material and a lecture all improved respondents' willingness to donate and reduced concerns regarding sample donation. Medical background was a critical factor affecting attitudes toward sample donation after publicity. The results of this study suggest strategies that may popularize biobanks and enhance sample donation, further promoting the development of biobanks.

Project description:IntroductionWaiting rooms in general practitioners' (GP) surgeries are a potentially useful site for spreading educational messages about health behaviors. We aimed to evaluate the impact of posters displayed in GPs' waiting rooms on the number of donors attending the blood donation drives in the Aube Department of France. The secondary objective was to identify self-reported factors that incited people to give blood among donors who did and donors who did not see the posters.MethodsObservational, multicenter, prospective study, from 1 June to 31 December 2021. Six blood donation centers in the Aube Department were selected. All GPs located within a 15 km radius around each center were invited to participate by hanging posters advertising blood drives in their waiting rooms. The number of blood donations per hour was measured before and during the campaign. Factors prompting people to give blood were evaluated by questionnaires completed by persons attending the blood drives.Results33 GPs participated. The number of donations per hour was lower in the year in which the posters were displayed (2021) compared to the previous year (12 vs. 15). A total of 1,469 questionnaires were completed by blood donors: 729 reported having seen the posters, and 740 reported not having seen the posters. Those who claimed to have seen the posters were more likely than those who claimed not to have seen the posters to respond that in parallel, they had been prompted to give blood via online publicity (7.5 vs. 3.9%, adjusted Odds ratio [aOR] 1.75, 95% confidence interval [CI] 1.12-2.82, p = 0.02). They also more often reported that they had been prompted to donate by television advertisements (8.0 vs. 4.2%, aOR 1.74, 95%CI 1.10-2.76, p = 0.02). Overall, 68% of all respondents indicated that posters in the GP's waiting room would incite them to give blood more often.ConclusionThe number of blood donations per hour was lower during the year in which posters were displayed. Questionnaire data from donors suggests that promoting blood donation via posters in GPs' waiting rooms could have a positive effect: 68% of donors claimed that posters would incite them to give blood.

Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.

Project description:Background:Understanding the demographic features of blood donors is important for identifying the donor structure and guiding the recruitment and retention strategies of donors. This study was aimed to determine the demographic characteristics of blood donors, the types of donation drives, and the frequency and reasons for pre-donation deferral in our population. Methods:This cross-sectional study included data analysis of all prospective blood donors presenting themselves for donation at the Blood Bank of the King Fahad Military Medical Complex, Dhahran, Saudi Arabia between January 2010 and December 2018. Eligibility of blood donation was assessed using a standardized history questionnaire, physical examination, hemoglobin estimation, pulse rate, blood pressure, and temperature. The questionnaire included the demographic features of the donor such as age, gender, and the reason for donation and other specific risk factors that potentially affect the safety of the donor or the recipient. Data analyzed using the analysis of SPSS version 20 (SPSS Inc., Chicago, IL, USA) were used to calculate the unadjusted odds ratios (OR) and the respective 95% confidence interval for the association between the various demographic parameters. Results:A total of 28,189 potential donations were recorded during the study period; of these, 77.4% were family replacements with females accounting for only 1.8% of all donations. Most of the donors were Saudi nationals (92.1%) of whom donors between 18 and 34 years old constituted 87.9%, while those over 40 years old represented only 7.9% of the donations. Pre-donation temporary deferral occurred in 3300 (11.7%) of all potential donation attempts. The most common causes being the recent intake of medication (24.4%) followed by low hemoglobin (14.8%), low or high blood pressure (14.6%), low or high pulse rate (13.6%), and low weight (11.6%). Conclusion:A profile of blood donors consisting mainly of young male citizens who mostly donated for family replacement was detected. Deferral rate was found to be average when compared to other countries; the causes being similar to those detected in other developed countries. Simple descriptive statistics has shown no marked difference was noted over the 9 years of the study in neither the profile of blood donors nor the cause for temporary deferral of prospective blood donors.

Dataset Information

Attitudes of blood donors to their sample and data donation for biobanking.

Publications

Attitudes of blood donors to their sample and data donation for biobanking.

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