We do think that for any type of research for which the goal is to publish in top-tier journals, it is critical to engage trained researchers and follow rigorous research methods – that includes both qualitative and quantitative research.  That said, there are many highly valuable projects that can be conducted with minimal resources and training that can be useful for local program improvement.  For example, focus groups and individual interviews involving potential/actual HSC donors can yield information about cultural/religious beliefs, misconceptions, and key concerns that may be barriers to donation.  Recording these conversations – either via audio-recording or intensive note-taking – is important so that they can be reviewed for key themes.  There are multiple low-cost software programs that can assist with extracting themes from written text (e.g., NVivo and ATLAS.ti).  It is even possible to use Excel spreadsheets or Word for entering and code responses when resources to purchase specialized software are limited.  Information from these focus groups or interviews can then be used to tailor information and recruitment strategies to directly address donation-related concerns/barriers.

It is true that some information – particularly for qualitative research – may be lost in an audio-only telephone interview.  Even if the interview is conducted using an audio-visual platform (e.g., zoom), it is difficult to know how to code and interpret anything other than the spoken words (e.g., facial expressions and gestures).  Social psychologists have been working on ways to code facial expressions for many years but still have not settled on a systematic, cost-effective, and accurate way to do that except for the most general of emotional reactions.  At this time, the best strategy is to rely heavily on the verbal responses of research participants.

As noted in the presentation, we know that younger potential HSC donors are the most clinically desirable and least available to donate after having preliminarily matched a patient.  Younger donors are less likely to have health issues that preclude donation and using this donor group leads to better transplant outcomes.  However, younger potential donors also have the highest rates of unavailability (>50%) when contacted as a potential match for a patient.  We believe that trying to identify reasons for these high rates of unavailability is critically important and we have focused much of our recent research on this issue.  Here in the US, we also know that members of racial/ethnic minority groups are less likely to join the registry and more likely to opt-out after matching a patient.  We are highly engaged in trying to determine what barriers to donation might be specific to these groups.  If we were able to improve availability rates among younger donors and race/ethnic minorities by even a modest amount (e.g., 5%) it would have a substantial impact on the ability to find matched donors for patients in need.

The short answer is “yes”.  In the early days of most registries, potential registry members had to pay for their own typing and endure a blood draw at registration.  In combination, these things likely meant that only the most committed individuals ended up on the registry.  Lowering the threshold to join (i.e., making it easier) likely allows individuals who are less committed to join the registry.  However, in the US, a high threshold for joining also meant that there was a lack of diversity in the first few years of the registry.  There is no doubt that the cheek swab is here to stay as a typing method and that suggests that we need to find other ways to enhance/ensure commitment.  One of the most promising avenues seems to be online registration.  We know that individuals who join online are more likely to be available after matching a patient.  This is likely because joining online often means that the individual (a) has sought out the registry, (b) is likely to be better informed before making a decision, (c) is not subject to immediate social pressure to join, and (d) has had time to process the decision.  Our own research has found that individuals who joined with others, joined at a drive for a specific patient, joined at a college or university or reported that their ethnic group mattered in their decision of whether to join the registry are all more likely to discontinue registry participation.  Some registries have tried using a combination of recruitment strategies that involve live recruitment drives followed by a requirement that individuals enter/re-enter information online to confirm their decision to join.  We think that these are promising strategies that deserve additional attention and research.  Ultimately, finding ways to balance ease of joining with requirements that demonstrate commitment to donation are critical.

This is both a critical issue and a difficult one.  This is partly because many registries have grown so large that the cost of any engagement effort or intervention is often prohibitive.  That said, we have encouraged the registries we work with to try to find ways to actively engage registry members in behaviors that are consistent with HSC donation.  For example, registries could partner more closely with blood donation centers to encourage HSC donors to become regular blood donors – we know that blood donors are more likely to be available after matching a patient.  There are also often local volunteer opportunities centered around donor recruitment and management that can engage registry members and enhance commitment.   Finally, encouraging financial donation to registry-affiliated foundations is another way of fostering commitment.  Beyond that, any way that a registry can engage in active communication with donors is likely to enhance engagement/commitment.  This is a difficult issue and we recognize that additional creative solutions are needed.

Our research has found that there are several potential barriers to donation that may be unique to, or more prevalent in, this younger group.  These include fewer financial resources, childcare issues, work commitments, school commitments, and a sense that parents/family might worry about donation-related consequences.  These are all important issues to address to try to enhance availability among this group and creative solutions are needed.  Things like sending nurses directly to potential donors to administer pre-donation medications, assisting with provisions for childcare, contacting employers directly to explain the importance of donation and paying for workdays missed, and scheduling donation (if possible) around required school activities are some possibilities.

The second part of the question is about recruitment contexts.  We know that in the US, the two main contexts in which younger individuals join the registry are at college events and online.  Joining at a college/university is associated with less availability and joining online is associated with greater availability for reasons discussed in previous responses.  College campuses are a fertile recruitment setting and recruiting on campuses also enhances diversity of the registry – we would not want to eliminate this as a potential recruitment setting.  An interesting finding from our research is that on-campus recruitment is often targeted to or in proximity of athletic teams/athletes. Our qualitative research findings suggest that this group may also may have elevated concerns about how donation could impact their ability to perform their sport (recovery, long-term effects, timing of donation would coincide with their sport’s season/event). These college student athletes have been working on their sport for a long time and college athletics may be the culmination of their career and their way for paying for part of their education.  Finding ways to address concerns among this group is important.  Ultimately, we may need to take extra care that individuals recruited on campus are committed to donation.  A possible strategy that I mentioned above is to have a two-step process that requires an online activation and commitment affirmation after the live-drive campus recruitment.