3 tips for nonprofits sending charitable funds, from Cancer Support Community directors

In the nonprofit sector, ensuring grants and charitable funds land in the right hands quickly can mean the difference between stability and serious financial hardship. For those in need, the stakes are high. 

That’s why speed, security, and communication are top priorities for Karen Costello, MSS, LSW, OSW-C, and Kara Downey. They both work for Cancer Support Community (CSC) at the director level. 

And they both understand how important it is to communicate with the populations they serve about how to quickly and securely get funding to address the myriad financial consequences of disease. 

“When you’re offering grants to individuals affected by a disease like cancer, I think the first element is being clear of your goals and making the communications very clear as well,” said Karen Costello, senior director for patient navigation at the CSC’s helpline. “Someone can read the application and pretty much know if they fall within the criteria of eligibility.”

Making the application process as seamless as possible is only step one. In this week’s episode of “What’s in it for them?”, we also discuss:

• The importance of timely grant and fund administration in the nonprofit sector

• How to protect sensitive information - including both patient health information and financial information - when sending grants

• How to prioritize communication before and after the grant application process

Karen and Kara work on separate charitable funds at CSC. But both programs leverage similar technologies and best practices to ensure grant and fund administration goes off without a hitch. 

The following is an abridged version of our discussion

How does CSC support the cancer community?

Ian Floyd: Karen, can you introduce your grant program and your role? 

Karen Costello: I’m the senior director for patient navigation at Cancer Support Community’s helpline. And so from the helpline, we administer a variety of patient navigation programs – and, when we’re funded to do so – we're able to offer some financial assistance to patients and families. 

An example of that is one of our pediatric oncology grant support programs, where we partner with three pediatric oncology cancer centers across the country to give a little bit of financial security to families going through pediatric cancer treatment.

Kate Monica: And Kara what program do you run and, and what's your role? 

Kara Downey: I’m the director of program development and delivery at CSC, which is very much just a fancy way of saying that I help develop and disseminate programs for patients, caregivers, survivors, as well as healthcare professionals.

And one of the main programs that I run here at CSC is called our Peer Clinical Trial Support program. And so this BRO program is specifically for black cancer patients, survivors and pre-vivors who are interested in learning more about clinical trials. And so we're able to connect them to previous clinical trials participants who are also black or African American, and we're really grateful that we are able to compensate both our participants within this program as well as our peer specialists, who are kind of trained to provide that one-on-one practical and emotional support through the program.

Ian Floyd: Karen, you mentioned that your program's meant to defray some of the costs that aren't covered by insurance. Can you provide some examples of what those costs are, and the impact that's had on families? 

Karen Costello: Let's utilize that example of a child and a family diagnosed with cancer: that can mean serious repercussions financially for families. 

A parent may have to take leave from work. If they take leave from work for a longer period of time, the family may lose benefits, or they may have to pay for their own health insurance, whereas before the employer provided that coverage.

So there's gaps, whether it's a premium payment, a copay payment that's expected on the patient’s family to pay for, or it could be things like transportation or lodging. We have rural families who have to travel several hours to go to a surgery or a radiation or chemotherapy treatment. 

We also have families that experience not great outcomes. And so we will provide financial assistance for funeral expenses reimbursement when we have funding for programs like this pediatric oncology support program. We ask the frontline workers, the social workers, what the needs are out there. And then we're able to inform our grants program accordingly. 

Ian Floyd: Roughly how much are you sending and how frequently do these payments go out? 

Karen Costello: Typically when we have a financial assistance grant, it'll be $500. And that would be a one-time grant. And there are special circumstances sometimes where we are able to do more.

It really depends on the level of funding we have from donors. 

Kate Monica: Kara, your program is intended to increase representation of African Americans in clinical trials. How underrepresented is this population and what's the impact your program has had?

Kara Downey: We all know that clinical trials are really key to making progress against cancer, and currently it's only about one in 20 adult cancer patients that end up participating in a clinical trial. And of that kind of small percent, only 5% or so are black or African American. So we know that's a huge gap, and something that this program is really helping to address.

So some of the goals that we hope to achieve with the program are increasing clinical trial enrollment, increasing knowledge and awareness around clinical trials, because that's a huge barrier to enrolling in one, and also increasing this kind of patient-provider communication piece.

We actually just finished the pilot year of this program last month, which is super exciting, so it was a long time coming. 

I will say that we had, I think, about 130 participants, and of that, seven ended up enrolling in a clinical trial. Which is huge. We also saw really great increases in knowledge of clinical trials, what they are, how they work. And we also saw really big increases in that patient-provider communication piece.

So prior to participating in the program, only about a quarter of our participants said that they had ever spoken to their healthcare team about a clinical trial. And after the program, it was almost, I think 66%, which is great. And research tells us that communication piece is a huge barrier.

Kate Monica: Can you talk a little bit more about why that communication piece is so important? 

Kara Downey: I mean, it goes both ways.

So there's the patient-provider piece, which is when the patient is asking about clinical trials, but there's also that provider-patient piece, where the provider's bringing up clinical trials to a patient. So within this program, we're able to impact that patient-provider piece. But there's a number of reasons why that happens.

A lot of times there's justified medical mistrust within black populations and the healthcare system. So understandably, that can be a huge barrier to why someone might not want to bring up clinical trials to their healthcare provider. There's also language barriers, cultural barriers that can happen within that patient-provider relationship.

Streamlining the grant application process 

Ian Floyd: Both of these programs are pretty different. Can you talk a little bit about how you collect applicants, the process for going through those applications, and how you select who actually receives funds?

Karen Costello: Our typical criteria for a financial assistance program is that there has to be a cancer diagnosis and the person has to be under active treatment, and we do that because the parameters have to be set to make a program sustainable. But also we recognize barriers while in treatment or barriers to care, like transportation or lodging, can actually keep someone from getting life-saving treatment.

So in addition to the cancer diagnosis and active treatment status, we typically employ a percentage of the national poverty level as being a criteria, so we typically implement a percentage of that national poverty line, and what that does is gives a dollar amount by the number of family members in a family as the financial criteria to be eligible.

We will notify healthcare professionals in our network so that they can refer patients and families. And typically we will have a web form set up that is confidential. It allows either the healthcare professional or the patient themselves to go onto this web portal and apply.

That information goes into our encrypted inbox, and we have one dedicated staff member that sort of combs through the applications and notifies folks that we've received their application and it's under review. And then within a day or two, we're able to let people know if that funding is available to them.

Ian Floyd: That that process seems really quick. A day or two. Is that faster than other programs or is that pretty standard? 

Karen Costello: Well, I just know that when we automate it with the web form and when we utilize a tool like Tremendous, where we have our dashboard right up and we’re able to to fire off those grants, it's pretty seamless.

I think one of the recommendations I would make as a leader of a program like this is to make sure you have a trained staff person dedicated to this project. Because one thing is for sure – people will have questions. And we have a dedicated phone line with each of these projects. So when we open a project, we open up a toll free number to go along with it. 

And so that person can become quite busy. And having, again, those automated tools. But a dedicated team member to do this who's been trained properly – that's key, because we want to make sure we're communicating very quickly back to families. We don't want them to wait and wonder. 

Ian Floyd: Kara, could you tell us a little bit about how you'd administer things? 

Kara Downey: So within the peer support program, our eligibility is a little bit more simple than the program Karen spoke about. We require someone to be a cancer patient, survivor or pre-viver. So someone with a family history of cancer, but they might not have cancer yet.

And then they have to be over the age of 18 and of course, identify as black or African American. After we make sure that they're eligible and the right fit, we just do a really quick survey with them and then get them all matched up with a peer specialist. And so within our program, because it is a bit of a kind of longer intervention, we typically have our peer matching and relationship for about a month.

And then after they finish the full program – so, their phone calls with a peer specialist and a final survey on our end – we do issue them compensation through a gift card. 

What separates a great grant program from a not-so-great one

Ian Floyd: What's the difference between a well-run program and a less well-run one? We have a lot of clients that are in the nonprofit space, and I'm sure some of them are newer in their careers as well. What advice would you give them in running a good program and some mistakes to avoid? 

Karen Costello: When you are offering grants to individuals affected by a disease like cancer, I think the first element is being clear of your goals and making the communications very clear as well, so that someone can read the application and pretty much know if they fall within the criteria of eligibility.

And I mentioned earlier that having a dedicated staff member that is an expert on this program.  And I have to say, too, partnering with a company, like Tremendous, for example. We need to know that we're supported, and to be successful when you do experience an issue or you have a question, getting support back very quickly from the company has also been very important.

It's been great with Tremendous. I will say, when we are trying to do a quick turnaround, we need our partner company to also be able to do a quick turnaround, and that's never been an issue. I will tell you a negative side of the electronic version of a gift card can be people's level of security with privacy of information.

So making sure that the guidelines are in place, that there's no risk for someone's health information to get sent anywhere unintentionally. I feel like us being able to protect it on our side within our organization is a given. We always protect health information. We want to work with a partner that's able to offer that as well.

And so I think the timeliness, but also the security, is key here. 

Ian Floyd: The incentive that you all pay or distribute is different.  It's not necessarily a grant to cover some expenses. It's more of a thank you gift. But it still likely goes to similar expenses. Are speed and information security the number one priorities for you?Or are there other hallmarks for a program like yours? 

Kara Downey: Definitely speed and privacy are really important. I think as I mentioned earlier, that justified medical mistrust piece is something that is really relevant to black populations. And so we want to make sure that we're not part of that. And we're able to protect people's privacy and identity. 

But I also think one of the things that has made this program successful and is important when you're thinking about building other programs, is that messaging to the community. And so as Karen had said, having the application being really clear and understandable is really important.

But I also think health literacy, digital literacy, is essential. We want to make sure this program is specifically for black people and African Americans. So making sure we're using the appropriate imagery, making sure that we're using the correct language, is really important. Just making sure that everything is culturally competent.

The value of automation for nonprofits

Kate Monica: Can you talk a little bit more about the surveys that you send out? 

Kara Downey: We use a survey software called Qualtrics, which has been a lifesaver and super essential for this project. So we have a number of forms and surveys that we send out to the participant as well as that staff members or our peer specialists complete.

And so it's been great to have something we can automate. Whenever someone completes a form, especially that interest form, which is our first point of contact with a participant, I can get an email automatically sent to me. And so it's not something where I have to be checking a platform daily.

I can automatically know when someone's interested in the program. And as we've mentioned, timeliness is really important in a lot of our programs. So being able to have that immediate connection has been extremely important for our program. 

Ian Floyd: Karen, do you have any other tips or tricks or automations that have helped speed things along or make things more secure for your particular program? 

Karen Costello: I would just want to add that the dashboard that we have set up with Tremendous allows us to get a quick glance at the status of the program. And so some of that data is useful in our reporting out – in particular to our leadership, our donors. 

And I think a key to success for continuing any type of program in the cancer advocacy space, is to make sure that you're collecting data metrics that show the impact and outcomes. And with our ability to glean the Tremendous dashboard very quickly, it sort of marries well with the record keeping we do. We also use the Salesforce platform, and we can pull reports from that.

Having that up to the minute update on our financial grant program with the dashboard has been really key. If someone gives us a call and wants to know, “how many families have you reached? How many dollars have you dispersed in the past quarter?” It's super easy for any of us to get that information.

Ensuring grants and funding are inclusive

Ian Floyd: How were y'all sending dispersing grant money before using Tremendous? Were you using checks or physical gift cards that you went and bought at a grocery store or something? 

Karen Costello: I think a long time ago CSC did some of the purchasing of large amounts of the plastic cards. But now that we are virtual in the headquarters are 190 locations across the country, many of them are in a building, in a location, providing great services. We are from the headquarters and we're virtual. Especially the past few years, we've become almost exclusively virtual. The need for sending out the links has been paramount. 

But one thing I will say with regards to an electronic versus the plastic card is that we don't want to create a program where if you don't have an email, you can't get help. Or if you don't have access to a computer, you don't get help. 

So those [physical] cards have been still utilized in cases where people would prefer them either because of their comfort level with technology, or also some people just don't have access. 

Either they're spending days in the hospital and don't have a smartphone, or they aren't comfortable asking somebody else to get the link for them. So we still utilize the plastic cards, and that's a great element of our program with you at Tremendous.