Social media and direct/directed donor appeals, part 2

Last Friday’s post introduced a brief video and article on Mashable about the growing use of social media to facilitate the search for a directed organ donation. As promised, here are some issues that the article prompted me to think about that I think deserve further discussion.

Social media in context

The article primarily covers a U.S. based perspective. One thing that is important to remember, is that even though the power of social media to cross borders is undoubted, there are still limitations.  Infrastructural barriers to adaptation of social media platforms are not to be ignored. In South Africa, for example, internet service providers still have download limits for certain plans. So while people have internet access, a viral video may not be ideal. And anyone who’s been in a place with an unsteady internet connection also knows that communication online doesn’t always work smoothly or quickly as the best way to reach people.

Computer literacy and access is one area where inequality can rear its ugly head, and by proxy the adaptation and effective use of social media is uneven. So inasmuch as donor recruitment is working to reach diverse populations and rectify under-representation, whether you are using social media and the extent to which you use it may partially determine which communities you can reach and which remain underrepresented. You might see disproportion if you look at ethnicity, age, or demographics where computer literacy is stronger, for example.

Donor recruitment organizations that work in certain contexts themselves may not have strong enough social media literacy or the resources to provide continuing education or hire more staff to maximize its potential usage. This should be addressed and I hope TransplantInformers plays a role in generating solutions to these gaps in knowledge. Or in taking a more proactive approach, perhaps donor outreach and education can even be used as a starting point to getting communities more engaged in social media.

Freedom and Regulation

I think the Mashable piece demonstrates and mildly celebrates the way social media allowed patients and their families to take life into their own hands through an individualized plight. But what compelled patients and their communities to turn to social media and decide to use it in an independent direct appeal for a donor, rather than seek out organizational help or be successful through other channels is a big question for me. What does this say about official, institutional and formal organ allocation, donor matching and donor recruitment? As much as the freedom and speed of social media is exciting, its power to also circumnavigate regulation and accountability can also create some really dangerous misconceptions about the best ways to find a committed and willing donor.

And it brings up questions of what content in these social media appeals prompted potential donors to come forward. In terms of confidentiality and privacy of both donors and patients, there is plenty of reason for concern. Nonetheless these sorts of appeals will keep happening, so grappling ably with confidentiality and freedom is essential to improving the implementation of social media in the realms of transplantation and  donor awareness.

Measurement matters

One of the best things about social media is that the statistics available allow for analysis of the efficacy of  various outreach methods within a digital purview. Metrics are crucial to assessing practices and shaping the direction of recruitment efforts, and like it or not, quantitative data is often more valued than anything else especially in medico-scientific contexts.  Fluency in understanding and using social media data could go a long way in improving both donor recruitment and retention.

David Henderson’s excellent piece in the Huffington Post is a great example of reflecting on the uses of social media, blogging, and metrics. Having solid statistics will help determine how best to harness social media as a key player and provide better research and development of guiding principles in using social media for patient campaigns, donor drives and appeals in their many forms. It may also help us look critically at how evidence can support making social media more productive and meaningful.

Direction and ethics

Lastly, as demonstrated in the Medical Law Review article linked the last post  the ethics and laws of directed and undirected donation, have nuances that are too great to examine in a single post. But suffice to say,  social media can solidify or reinforce greater frequency of directed or conditional donation and facilitate a transplant in ways that the current systems of organ allocation may not presently provide. The phenomenon of patients and loved ones using social media to find a donor highlights how people can use an array of different tools at their disposal that unconditional/non directed donation does not mobilize in the same way. What implications does this have for these systems, and what compels people to search for a donor outside these systems? How will legal and bioethics decisions be affected by the advent of social media?

Dear TransplantInformers, please share your perspective on this. What ways have you found social media to be a handmaiden in your donor recruitment efforts? And are there challenges that independently run social media campaigns have presented in ensuring accurate information and ethical practice?

One Response to “Social media and direct/directed donor appeals, part 2”
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    1. […] loved ones were put on the transplant waitlist. This is a markedly different approach to all of the social media mobilizing, which seems to be on everyone’s mind since the Facebook App went live. It is interesting to […]

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