By James W. Lytle
Last week, Bill of Health published a Q&A with Phil Walton, the Project Lead for Deemed Consent Legislation with the National Health Service Blood and Transplant Division, and Alexandra Glazier, the President/CEO of the New England Donor Services.
In the first part of this conversation, Walton and Glazier described the various frameworks undergirding organ donor registries in their home countries. Walton detailed the “deemed consent” or “opt-out” registry employed by Wales and England, while Glazier detailed the opt-in, prompted choice framework in the U.S.
In this second installment, Walton and Glazier discuss strategies to encourage organ donation, regardless of the opt-in or opt-out framework. The conversation also touched on health disparities and strategies to address them.
James Lytle: Phil, presumed consent didn’t get implemented in a vacuum: what else did the NHS do to encourage people to become organ donors?
Phil Walton: That’s exactly right, and for such a significant change, there was a responsibility for us to communicate the new system, and that people still had a choice. Organ donation is such a powerful story for the media, so donor family and recipient accounts have been key to engage people with the human impact of this change in the model.
The law change in itself also gave a great reason to talk with influential figures, including wider engagement with faith leaders and minority ethnic communities. Subsequent to that base level of awareness, communication has focused on the role of the family and encouraged people to talk about organ donation — this has been key to the continued success in Wales, and will be our next focus in England.
JL: Phil, any thoughts on how prompted choice might help in the “presumed consent” context?
PW: Irrespective of “presumed consent” being in place, the call to action in our marketing strategy remains that people should make a decision about donation, record it on the ODR and share that message with their loved ones.
An example of a long-term prompted choice strategy employed by NHS Blood and Transplant has been in place since 2013. The GOV.UK website is a high-traffic site for UK residents to access a multitude of services from passports and driving licenses, to benefits or self-assessment for tax returns. When each transaction is complete, the user is presented with a screen that prompts them to join the ODR.
JL: Are there other things that might be done in the U.S. to prompt people to register?
Alexandra Glazier: There have been several effective strategies to prompt registration. Certainly asking people to register when they receive or renew their driver’s license has been very effective — as of 2019, the U.S. has over 158 million registered donors, with 96.5% having registered through a Registry of Motor Vehicles process.
Other prompts that have been effective are Apple’s partnership with DonateLife America to not only include donor registration in the iPhone health app, but to have organ donor status as part of the set-up flow for a new iPhone. This prompt for an iPhone owner to register as a donor when setting up their new phone has resulted in over 6 million registrations since 2016.
There are other system defaults that should be implemented to ensure the U.S maintains high numbers of registered donors.
For example, why are we asking people who previously registered as donors the last time they renewed their license whether they still want to be donors every license renewal cycle? This would seem to only provide an opportunity to make a “no” decision. Once registered, an individual should remain registered unless they take action to request removal from the donor registry. This process design improvement has now been implemented in a number of states, and is expected to significantly improve the rate at which individuals remain registered.
JL: Both the U.K. and the U.S. have experienced racial discrimination and disparities in the delivery of health care services. In the U.S., while Black people disproportionately suffer from chronic kidney disease and other conditions that may require transplants, there has been documented discrimination in their ability to access transplantation — and, at the same time, because of distrust of the health care system and other factors, Black people have been less willing to sign up as organ donors. Any thoughts on how to encourage greater support for organ donation within Black, immigrant and other disenfranchised communities here or in the U.K.?
PW: We’ve spent a lot of time reviewing these statistics recently. Health inequalities exist in many areas, and unfortunately organ donation is no exception. The key for us has been understanding specific factors for specific community groups — “people of color, “or Black, Asian, Minority Ethnic (BAME) groups are statistical groupings that don’t really tell us anything about the individual attitudes amongst particular minority ethnic groups. This has led us to adopt some underlying principles across our behavior change work:
- designing what we call “culturally competent communications” — tailoring our communications with specific communities as much as possible and ensuring we celebrate what progress has been made and empower individuals to be part of making that difference.
- Representation throughout our mass communications plays an essential role in encouraging residents from diverse backgrounds to donate. All our marketing assets are available in diverse versions, tailored for specific groups.
- The introduction of “presumed consent” has developed opportunities not previously seen in the U.K. with respect to organ donation. Previously, some faith groups had been hard to reach and develop relationships with to support organ donation. However, the legislation has allowed us to work more closely with some faith groups, specifically the Muslim and Jewish faiths. We have worked closely with Islamic scholars on a fatwa to support organ donation within their communities, and we’ve also developed a specific faith page on the NHS ODR designed to provide assurance to people of faith that organ donation can proceed in line with their individual faiths and beliefs.
- Working with trusted partners in the community — we recently launched the third year of our Community Investment Scheme grant funding call, empowering grassroots organizations passionate about organ donation to spread that message within their communities. This video explains why this initiative is so important to the BAME community in the UK.
AG: I agree — racial disparities in health care access is a significant issue in the U.S., including in organ transplantation. Access to the waiting list requires access to medical evaluation for transplantation, and adequate insurance coverage to be accepted as a candidate. While the kidney transplant wait list in the U.S. is disproportionately Black as compared to the general U.S. population, it likely does not reflect the full extent of the need, given the barriers to care we know exist.
On the organ donation-side, there are a number of specific efforts like the ones described by Phil underway by organ procurement organizations nationwide. These outreach efforts are focused on working closely in communities of color to build trust in the health care system and specifically around the issue of donation.
The Association for Multi-Cultural Affairs in Transplantation (AMAT) takes a national leadership role in “closing the donation gap” and providing resources for the donation community to effectively collaborate with different communities of color to increase organ donation.
AMAT sponsors a National Minority Donor Awareness Month, which is a national collaborative initiative with participation from other associations and the government (including the Association of Organ Procurement Organizations (AOPO), Donate Life America (DLA), Health Resources & Services Administration (HRSA), National Minority Organ Tissue Transplant Education Program (MOTTEP) and National Kidney Foundation (NKF)) to save and improve the quality of life of diverse communities by creating a positive culture for organ, eye, and tissue donation. Outreach activities include events to provide donation education, encourage donor registration, and promote healthy living and disease prevention to decrease the need for transplantation.
However, there still is more work that can and should be done to address the social inequities that persist within organ transplantation.