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Data Collection to Assess Socioeconomic Status and Access to Transplant

Proposal Overview

Status: Public Comment

Sponsoring Committee: Minority Affairs

Strategic Goal: Provide equity in access to transplants

Read the proposal (PDF; 01/2020)

Contact: Ross Walton

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eye iconAt a glance

What is current policy and why change it?

The OPTN currently collects limited information that pertains to a transplant candidate’s socioeconomic status (SES). Collecting detailed socioeconomic related data will inform the OPTN and the public. (e.g. assessment of the potential impact candidates’ SES could have on access to organ transplantation).

What’s the proposal?

  • Transplant hospital staff would be responsible for asking candidates at the time of registration on the waitlist their annual household income and household size.
  • These two data points would be entered on the patient’s Transplant Candidate Registration (TCR) form.
    • At the time of listing, every transplant candidate has a TCR form entered into UNet℠, the OPTN computer system.
  • This data will inform OPTN Committees and the community on the impact of a candidate’s socio-economic status.

What’s the anticipated impact of this change?

  • What it’s expected to do
    • Transplant hospitals would develop a process for collecting annual household income and household size from candidates and enter the data in the TCR form.
    • This data will inform OPTN Committees and the community on the impact of a candidate’s socio-economic status.
  • What it won’t do
    • Candidates access to transplant will not be impacted by providing this information.
      • The two data points are for informational purposes in future analyses by OPTN Committees and the community.
    • Provide any data on patients who were not referred to the waiting list.

Themes to consider

  • Best types of data to measure SES
  • Barriers to collecting data
  • Timeline to implement required collection of data

Terms you need to know

  • Annual household income: total income (in US dollars) for all persons living within the transplant candidate’s home.
  • Household size: the total number of people living in the same household as the transplant candidate who are dependent on the household income.
  • Transplant Candidate Registration (TCR) data collection instrument: The data collection instrument completed and submitted by the transplant hospital when a patient is added to the waiting list or when living donor feedback is completed for patients who are not listed. The form contains information on candidate demographics, previous transplants, payment, clinical information at time of listing and organ specific medical factors.
  • Click here to search the OPTN glossary

Comments

Stephanie L | 01/31/2020

This proposal was presented in a way that was easy to read and understand the points being made by the sponsoring committee. From a patient perspective, it does make me slightly worried. Specifically, what happens when someone comes forth and the income level is below a certain level, what if that the transplant center deems that too low for transplant? It’s fairly common knowledge that you have to have insurance in order to receive a transplant. But will this now change transplant centers to look at overall income as part of their criteria when listing someone? If someone has a low household income, and numerous family members, will the center discount them as being a quality candidate? I think, from an ethics standpoint, there needs to be some type of follow-through with the committee ensuring that transplant centers cannot discriminate against those with lower incomes. You need to be able to afford the transplant and post-transplant medications (of course); but there are resources that can be explored with the candidate and transplant center. Resources including Medicaid, SNAP, etc. And those resources should be highlighted even more so if this is put into place. I understand that this proposal is not saying that those with lower incomes should not get a transplant – however, an ethics section to clarify and add context to what can be done in the grand scheme of implementing this proposal could help individuals support this.

Nancy Long | 02/02/2020

It is well known that patients from lower socioeconomic populations don't do as well post-transplant. Placing an additional burden on transplant centers to add even two more fields of data that are not going to give new information is unreasonable. The fact that the income data is not going to be geographically cost adjusted makes it essentially useless. Based upon what patients tell us in other areas, I believe that the accuracy of the data will be questionable at best. Lastly, the accuracy of the data of number of people in a household will also be questionable at best, particularly if patients think that data could be shared with government agencies that could change or withdraw their financial aid.

Darnell Waun | 02/06/2020

I am concerned about the ethical issues related to use of this added data set. If the data show that there is a relationship between SES and transplant equity/outcomes will this lead to "quotas" being developed that could disadvantage overall organ transplant in certain populations. The proposal is not clear on how SES will be stratified. All income levels are not equal across the nation and no adjustment has been spelled out. While I believe that household income and number of people may be valid parameters for identifying SES, I think the disparities in actual utilization of this data set has strong potential to put this on a slippery slope.

Anonymous | 02/07/2020

Assuming that the data collection is for research purposes that will hopefully assist with forming future policies that will ensure equity in transplants, this policy can be beneficial if handled correctly. Rather than requiring transplant hospital staff to collect this information, perhaps a better approach would be to have it be part of an optional survey that candidates have the choice to complete after their transplant evaluation. There should be a clear explanation that neither participation in the survey nor their answers will affect their ability to receive a transplant and that the sole purpose of the survey is to ensure fair access to transplants for all candidates. Information about their annual household income and household size could be sensitive information, so it should be treated in a sensitive manner and in a way to prevent any misunderstandings or mistrust.

OPTN Region 4 | 02/08/2020

Strongly support (3), Support (9), Neutral/Abstain (6), Oppose (4), Strongly Oppose (3) Comments: Region 4 supported the proposal but there were concerns around the reliability of the data and the data entry burden on centers. There was a recommendation that if the data is collected, it will need to correct for the cost of living index to be meaningful. In addition to income, it is also important to look at expenses. People can make a lot of money and still live pay check to pay check. Only collecting income will give the committee a very narrow view of SES. There was a recommendation to also include zip code data to account for the living environment and neighborhoods. These factors have a huge impact on access to healthcare and follow-up. Some commented that in addition to the proposed data, the committee should also consider how transplant hospitals are utilizing programs that offer financial assistance.

Anonymous | 02/17/2020

I do feel that this is an issue in our selection criteria that we are eliminating many candidates with a lower socio economic status. I do not feel this is intentional by any means. I think that having the data would allow us to study if this is a bias in our criteria, selection process etc. I do not know the best way to collect this information at the centers, as I fear lower socioeconomic status would then relate directly to selection criteria and candidacy decisions. I think that perhaps having the patient submit this data online anonymously, or in a way that the center would not have access could be one solution. I know that psychosocial factors have a huge role in post transplant success, however I worry that we are weeding out all candidates of lower socio economic status and by keeping the data we would see this correlation, which could allow for changes to be made.

Anonymous | 02/17/2020

I currently work as a Kidney Transplant Financial Coordinator. I oppose this proposal for the following reasons: 1. It will put extra documentation burden on the transplant center. 2. It could cause patients unecessary worry that their financial status will be a deciding factor when a deceased donor transplant becomes available. 3. At our center, before a patient is approved for active listing for a transplant, we evaluate all aspects of a patient (medical, financial, psychosocial) to make sure they are ready for a transplant. Asking for financial data at the time of listing would not help us.

Anonymous | 02/17/2020

Collecting financial information is not the responsibility of the transplant coordinators. It interferes with the attempt to establish trust with the patient. It is highly variable based on the stage of the patient's disease process - a kidney patient might be employed fulltime at the time of evaluation, progress to disabled while waiting, and able to go back to work 3 months post transplant, become divorced and pay child support, for instance. Number in the household can also be highly variable. Marriage, college, dependents can all vary from year to year. Do you ask for what they fill out on their IRS forms? Update every year? Asking for this information is intrusive, makes patients question why these questions are being asked. Lastly, it is another burden for the transplant coordinators and the information provided is highly unreliable.

Anonymous | 02/17/2020

A transplant candidate's income is a very sensitive topic, and patients may have concern that the information is being used to determine candidacy. There is great focus on paying for medications after transplant, so one would naturally assume that their income would be considered by the center when determining candidacy, even if adequate health insurance is in place. For this reason, I don't know that patients would be honest about it. I do agree that this should be studied, but having it as required information from patients into a governmental system is not the best way to study it. Several good points also listed about understanding expenses and what part of the country in which one lives.

STSW | 02/17/2020

I have concerns about this proposal and I think this data can already be traced by insurance coverage, such as Medicaid. We know low SES is more prominent in minority populations, and we do not need to continue to add extra barriers to their candidacy. Even though financial issues can potentially affect graft function, I am afraid this action could single out people even more. As long as the family can manage their care, nobody should miss an opportunity for a life changing procedure, because of their SES. I believe in the future, this could potentially negatively affect hospitals that serve more of this population as well.

Wanda Gbemudu | 02/17/2020

While I do see some benefit in obtaining this information from a research standpoint, I would have some concern about the ethical stance on obtaining this information. Will this information have any bearing on a patient's opportunity or access to transplant? What other ways might this information be used in the assessment of the potential recipient? Can this lead to a bias towards those of lower socioeconomic status?

Dori Muench | 02/17/2020

While i can appreciate the motivation behind the collection of this data, I do not know how it would improve access to transplant. There is already documentation and data available on SES and access to transplant. I find it more valuable to consider household income vs expenses as a more valuable tool. This, of course, would be time burdensome.

Anonymous | 02/18/2020

Socioeconomic status is unquestionably a factor in the success of the post transplant population, however, it is not a barrier to seeking the services of a transplant center. If the patient has the resources to support the costs of post transplant care (the reality of which exists whether it seems fair or not) the success rate is increased. There are numerous resources available for disadvantaged patient populations. The bottom line is if they don't have the financial and social support, and those resources cannot be obtained, the success is unlikely. Placing the patient in a position to ultimately fail because we don't take that into consideration is unethical. Centers already do the work of assuring these avenues are thoroughly explored and no matter what the income/dependent information might show, the likelihood of success of the post transplant patient is the salient point of the end result. The addition of these intrusive and potentially misleading questions generates more work and not enough gain to warrant it.

Angie Korsun | 02/18/2020

While I can appreciate the rationale for wanting this data collected, it’s unclear what OPTN/UNOS would be doing with this data. Its no surprise that patients with limited fiscal means and from lower SES are challenged in accessing healthcare overall and that includes transplant. Ascertaining someone’s household income and size is only one of several factors that may impact someone’s ability to access care. Lack of gas money or not having a driver’s license or a functioning car could create difficulties even if household income does not. In addition, what will OPTN/UNOS do with the information other than potentially issue a statement that lower SES negatively impacts access to care. We know that already. UNOS/OPTN does not have the means to change social policy or alter the societal factors that reduce access to healthcare.

Dawn Freiberger | 02/18/2020

I support this proposal with some significant hesitation. I believe this data should be collected and that UNOS should be looking at it to determine if there is a bias in who is being listed and transplanted. I agree 100% that families need to be able to afford transplant medications and need to be able to get to their transplant center, etc, however, there are too many patients being turned down for transplant because of their social/economic class. Patients with more money have greater access to transplant than those with less. That should not be. The problem is how is that fixed? How do we support patients who have difficulty with transportation, medications, hotels, and meals during travel. Few state Medicaid programs support these additional expenses. I don't see that changing any time soon. I share the concern of other comments written here, that if this information is disclosed to the transplant center, it could be a reason that the transplant center declines a patient for listing, thus making the bias even worse. I am not sure how to overcome that. Also, there are many patients that never make it to listing. Many of them are for financial reasons. This system proposed does not capture these patients. So I am not sure how accurate the data would actually be in the end.

OPTN Region 6 | 02/18/2020

Strongly support (0), Support (2), Neutral/Abstain (4), Oppose (10), Strongly Oppose (1) Region 6 did not support the proposal. While there was one comment in support of gathering this data, the rest of the comments expressed a number of concerns. Patients who get listed on the waiting list are already a highly selected group, those who are extremely disadvantaged don’t even make it to the list. Some patients could be offended to be asked for this information. Transplant staff are already uncomfortable asking patients for their citizenship status, they would also be uncomfortable asking for this information. Members raised the point that many patients would feel the need to lie when asked these questions, whether to artificially inflate or deflate their income. Several shared concerns that the collection of this data could backfire, resulting in less access for those with a lower socioeconomic status. Specifically, if it is found that patients from lower socioeconomic backgrounds tend to have poorer outcomes, that could factor into the transplant centers’ decision to evaluate, list and transplant these patients for fear of punitive measures regarding poorer transplant outcomes.

Rebecca Pirozzi | 02/18/2020

The transplant coordinator gathers enough information from the patients in order to fill out tie dies. Any socioeconomic information needed post transplant should be in the form of surveys sent to the home from UNOS and data entered from them as well.

Anonymous | 02/18/2020

I am absolutely opposed to transplant centers collecting this data on their candidates; it feels unethical to me and I am pretty certain it will cause an additional layer of anxiety for patients who are already in a very anxiety-laden situation.

Anonymous | 02/18/2020

I oppose gathering financial information on potential transplant candidates socioeconomic status. Gathering household income and household size without factoring in household expenses, debts, potential for re-entry into workforce, or geographic differences in cost of living makes the data useless. Besides, who is going to verify that what the patients states is actually correct? I have no desire to go through patient bank statements to confirm that the information they gave to me is valid. It seems potentially discriminatory and at the very least would increase a patient's feelings of being judged during an already stressful evaluation process. I know of no other major medical treatment for which access is dependent on an individual's income or resources, only their ability to access insurance coverage and ability to pay for care. Unless there are clearly laid plans for how the data would be used to facilitate programmatic changes designed to improve access to and equity around transplant, I am opposed to collecting this data.

OPTN Region 8 | 02/18/2020

MAC- Data Collection to Assess Socioeconomic Status and Access to Transplant • Income level was largely rejected as a question by living donors in the living donor registry project • It would be difficult to obtain income data. The issue is access to the healthcare system and not as much about being listed. • This is not a normal question to ask. There is an issue of pride – some people might not be honest because of this. It would be better to make it an optional field or include option for “not disclosed” • Poverty level would be a better data point than income, adjusted for household size • If the data is incorrect your analysis would not be reliable. Reporting income to a national database may not be a good idea • Knowing the income level of our veterans is not indicative of whether they will receive a transplant. It would not add any value • Cost of living varies widely, knowing the household income is only part of the equation. There is a better way to analyze if finances are a barrier to access to healthcare Vote on proposal as written: 0 Strongly Support, 3 Support, 2 Neutral/Abstain, 13 Oppose, 2 Strongly Oppose Vote on amendment to use percentage of poverty line as data field/indicator of SES: 1 Strongly Support, 7 Support, 3 Neutral/Abstain, 8 Oppose, 4 Strongly Oppose

Anonymous | 02/18/2020

Agree with Region 4, and many other comments about the validity of this study (ie, is this test actually measuring what it claims to measure). 1. There is a great deal of research that supports disparities in health based on zip code, which may be a more accurate measure of access to transplant than income. Income varies based on cost of living, and I do not believe it can be applied broadly. 2. Another concern is the assumption that LSES leads to poorer outcomes. However, we all have patients who have LSES and are resilient, resourceful and adherent to recommendations and medications. And there are other patients who make more than what would qualify as LSES, but still cannot afford the costs of transplantation. I am also concerned about the reliability of the data that would be gathered. 1. Will we have a good, reliable data set if some patients are providing this information and others are opting out? 2. Helping patients with prescription assistance, I have learned that many patients do not know their actual household income and provide an inaccurate guess. 3. Patients are already overwhelmed and afraid going through the scrutiny of an evaluation process. Providing income is sensitive personal information, which culturally we are taught not to share with others. Patients are told that everything in the evaluation process can impact their candidacy. Considering these factors, even if we explain to patients that providing this information would not impact their candidacy, might they still feel fearful of how that information could be used? Might vulnerable populations feel further stigmatized by providing this information? Would patients feel they have the ability to say no or not comply with providing this information? Ultimately, with questions like these in mind, will patients feel they can be forthcoming about their income status? And will they feel like they can be forthcoming about their fears or discomfort with such questions? I think this proposal is well intended, but it could lead to unintended consequences. At this stage, I also think the validity and reliability are too questionable to draw conclusions from the data that would be collected.

Peter Kapinos | 02/18/2020

With dossier being read, I don't fully understand the motivation or the clear functional output as to what exact details this data will do once compiled; basically, it appears like collecting data for future unknown use. Also, why is it part of "minority affairs committee" and not part of the greater good of OPTN, the data it already collects? Is there an underlying assumption that hasn't been stated or a hypothesis to confirm? What will be the data function if the hypothesis isn't confirmed? A great deal of transplant kidney transplant patients are unemployed regardless of race. If I was to present to a health care facility and be asked these questions at time of registration, I'd have to believe it is relevant to a future care quality. Please state the ideal results from this data. Stipulated: additional work burden of collection.

Anonymous | 02/18/2020

1) I recently spoke with a transplant recipient who was treated in a biased manner re: waitlist candidacy when she was queried about her household income. She said that the social worker assumed that she couldn't afford to have a transplant, and pay for monthly meds, due to low level of income. She said that the social worker never asked her about any 401Ks, CDs, savings, inheritance, other properties, etc. that she might also have. She said that if the social worker had asked about those additional resources, the social worker would have realized that she could very comfortably afford the meds. 2) I believe it's discriminatory to insist that patients must first have a certain amount of money saved up, such as $5000, towards post-transplant expenses before they can be put on a transplant waitlist. Some low-SES patients do not have adequate support networks to help them raise such a comparatively large amount of money. Our team does a lot of work with low-SES patients, after transplant, to help them obtain grants to cover the cost of their meds. It's a lot of work, but we believe they should have the same right to transplants as patients with higher levels of incomes and savings accounts.

Anonymous | 02/19/2020

This proposal is unethical for all the reasons outlined by others. Rather than enhance transplantation it has the risk of alienating patients.The data is very likely to be inaccurate. Finally, it imposes an necessary burden on transplant centers to collect the data.

Laura Hulse | 02/19/2020

Income inequality has been implicated in perpetuating health disparities through its effects on the provision of healthcare, not just access to transplant. The addition of annual household income and household size may help provide better insight into regional disparities, although I am unclear what social policies or interventions the OPTN would implement to resolve these. As these data would be collected for research analysis, an issue of validity of data reported (annual household income) would arise. Intentional or unintentional misclassification or misrepresentation of household income by a transplant candidate would contribute to an underestimation or overestimation of the effect of income. Would transplant programs be required to maintain some sort supporting documentation regarding transplant candidate annual income or validate what is reported? Patient reported unmet healthcare needs, such as not filling prescriptions because of cost, needed mental healthcare or counseling services and could not get due to financial burden, unable to afford needed dental care, etc., may provide better insight into SES or effect on transplant.

Anonymous | 02/20/2020

As a transplant social worker, I'm struggling to support this proposal for the following reasons: 1) Data collection burden on centers- The proposal states that centers already collect this data at some point during the evaluation. This is not the case at our center. We ensure that a patient has adequate insurance but we do not ask for their actual household income. 2) SES can be reasonably attained with zip codes, especially in conjunction with highest level of education- which is already collected for the TIEDI forms. The proposal does point out that zip codes can be broad and include many different levels of household income, but is the variation really going to be great enough to significantly affect the purpose of the data collection? Why not use data we already have, that has been demonstrated to reasonably reflect SES, without making patients uncomfortable, and risking bias from transplant professionals. 3) Asking a patient for their household income is uncomfortable for many patients for a variety of reasons. They may not want to share this information for fear of being judged one way or another. They may exaggerate the number one way or another depending on whether they think having a higher income may make them more likely to be listed, or whether having a lower income may help them obtain more assistance. Furthermore, some patients honestly do not know what the dollar amount of their household income is. When assessing patients, social workers typically talk to the patients about what resources they already have- Medicaid, SNAP, HEAP, housing assistance, etc. Instead of asking a patient's household income amount, could the question on the TIEDI form simply say "Is patient currently receiving any benefits/resources based on their income?" Since most of these state and federal benefits maintain eligibility requirements that the patient fall below the federal poverty level, it's reasonable to assume that if the answer is "yes", then they fall in the low SES range. 4) Collecting this specific piece of data has the potential to add bias to listing patients and transplanting them, specifically if a center is concerned about outcomes and decides not to list or transplant a patient based on their income, in fear of poor outcomes. 5) What is the detailed purpose of this data? The proposal states it could be used in the future to affect policy in attempts to eliminate disparities in transplant, which as a social work I am all for. But what specific policies? What actual action can be taken to improve disparities in transplant based on SES? And is SES ascertained from zip codes and education level really going to skew whatever policy changes may happen?

Anonymous | 02/20/2020

While we recognize the value of data collection for analysis and correlation, we do not agree that it is appropriate to assess for this information. Also, due to the sensitive nature of this personal information, the data collected may not be accurately reported by the patient, may not be provided at all and is not verifiable, therefore making this information unreliable. Lastly the request for this information may seem invasive and could suggest that programs are screening out patients with lower socio-economic resources.

Region 5 | 02/21/2020

Strongly support (5), Support (10), Neutral/Abstain (3), Oppose (11), Strongly Oppose (2) Comments: Region 5 was split on this proposal. There was some active discussion and questions regarding data that is currently collected, potential burden of collecting more data and the accuracy of the suggested data points. • What data points are already been collected? • Even if you were using annual household income there is often additional people not in the home that are being supported by that income • Patients may not be honest with income because of qualifying for benefits • Household size can vary throughout the year, the patient might be working at the time of listing but not if the y get sicker • Income is already a field that is really hard to define, this will be an additional burden and hard to keep consistent • Will there be a risk adjustment? • Collecting this data may contribute to internal biases, was this discussed by the committee? • Applaud the effort to understand the problem, how will this data truly be able to impact patient access to transplant? • How would this change allocation?

Catherine Rea | 02/21/2020

I am struggling with this proposal for a number of reasons; many have been discussed very well in other public comments. This will add a significant burden on our coordinators and could harm the trust and their compassionate relationship with our patients and families. Our families are scared at the prospect of a transplant for their child. The last thing we would want is to have them worry about answering these questions, especially about income. It feels very intrusive to me. Our patients and families trust that we accept them for who they are; we do not judge in regards to race, religion, sexual orientation, socioeconomic status. I don't agree we should make this change. It should not be a requirement for listing. Our social work colleagues are wonderful at asking families about their finances and then helping them get assistance as needed. They also ask about the family's support structure and living arrangements to ensure a child who receives a transplant will be safe and cared for appropriately once leaving the hospital. In my opinion, these questions should not be a requirement for listing.

Anonymous | 02/21/2020

knowing a persons household income does not amount to if someone can afford a transplant or not. It does not change their bills if they have over extended themselves. Knowing household size would only be for statistical reasons as this does not change a persons income outside of being eligible for Medicaid. We ask information of who is living in the home. That definitely does not equate to support both physically or financially at times. In our program this would be a financial counseling job as they assess for Medicaid and other insurance supports available.

Marcella Herriott-Ilori | 02/21/2020

I am a Transplant Financial Coordinator and I am opposed to this proposal mainly because our center is located in a " urban economic depressed area." Many of our patients are Medicaid only. Patients are already worried about not being listed because they don't have "a large bank account." Patient are more likely to balk about giving us the information or lie about their income. Can anyone guarantee that the information will not be used to "weed out" financially undesirable candidates.

Anonymous | 02/27/2020

I believe these data will only be valuable if insurance information is included, i.e. Medicare, Medicaid, Employer/Private, or Marketplace. For example, a very low income patient in Virginia will have full Medicaid coverage and medical transportation, and will experience less impact on their finances after transplant than a patient with a somewhat higher income who has Medicare only and will be responsible for 20% of all their outpatient medical bills after transplant. Or a middle-income family with inadequate prescription coverage through their commercial plan may experience a significant financial impact and difficulty paying for medications. I believe that insurance coverage combined with income data gives more insight into access to transplant than household income alone.