Today I talked about the programme that we are doing in the Philippines that is something we’ve been doing since 2000. It’s a community-based breast cancer control programme we call Ating Dibdibin or, in English, Take Your Breast Care to Heart, or Take Your Breast Health Issues Seriously. We don’t have a national cancer screening programme yet in place so this is our bit helping government push this forward. We partner with cities to institutionalise this breast cancer control programme. We partner with cities because the mayors directly call the shots in the city health office so it’s easier to deal with them, they are the biggest, easiest champion for the programme. We don’t partner with a city unless they agree to make the programme a local law or an ordinance because that way the programme stays permanent no matter who the mayor is and there is an assured funding stream somehow for the programme.

So we basically make sure that all the breast cancer patients are serviced through the whole continuum of care from prevention all the way to treatment, survivorship and supportive care, palliative care. The whole shebang, the whole service delivery and, of course, putting in place patient navigation. So, some of our cities have patient navigators for each village. It sounds so simple to people from rich countries, but in our country there is no patient navigator for cancer in the community. So this is the first of its kind. We have navigators in hospital settings, public and private, but in the community setting there is really none. We discovered that patient navigation is really one of the secret ingredients to making any programme fly regarding cancer and patient compliance.

So recently we also decided to digitise and build a digital infrastructure for the programme. As you know, if you can’t measure it you’ll never really know where you’re at. You have no way of improving, you have no way of knowing the gaps in care, instantaneously. It was something we’ve always wanted to introduce a long time ago but it was so hard for local government to embrace the concept. It seemed like a lot of work, it’s tiresome, so everything had been paper-based. But since the pandemic everyone got used to digital stuff, QR codes for vaccination, entering a building, the buy-in was much easier this time. What I’m proud to say is that patient navigators who are usually community health workers, some of them are not college graduates, are the ones really driving the building of this data infrastructure. They’re the ones putting all the inputs. 

So in this platform we call the Circle of Life, it’s web-based, we had to start it, we couldn’t do an app, it was too sophisticated for the simple smartphones of people in the community. It couldn’t be Google Sheets, there were security problems, so it’s now a web-based app. It’s a simple electronic medical record of sorts but doctors too can put their notes and record and document every patient visit, lab results can be uploaded as well. You can upload photos. We also document the financial journey of the patient so you know where they’re getting their funding, which the navigator helps them with, and who is taking longest, so the gaps in care.  Also those using the platforms are doctors on the team of the city partner, the city health office who is on top of it, and also the hospital personnel. So we are sure that there’s data privacy because very few have access to everything – the navigators are very limited in their access, it’s usually certain officials only in the city health office who have access to everything in the dashboards. 

It's been wonderful, for instance the platform is giving more gravitas or giving more weight to the asks of the people in the city. So, for instance, we were wondering why it took so long for anyone with a suspicious lump to get an ultrasound and we found out because there’s only one ultrasound in the hospital for all diseases. When you talk to the hospital personnel, let’s say the nurses, they say, ‘That’s been there, it’s been a problem, nothing new to us. We complain about it.’ So it’s something they complain and complain, I guess no-one pays attention. But now they can go to the mayor and say, ‘We need our own ultrasound dedicated to breast cancer because we’re depriving 150 people who are waiting.’ So their asks can be very specific, it’s data based and so it’s easier also for the mayor or whoever runs the city to allocate resources when they really see the gap in care and the consequences of this gap.

How does the ICanServe Foundation partner with cities?

When we partner with a city we can’t really tell them what to do, we can just share what has worked with our other city partners. We can share templates but, in the end, they really call the shots. It’s always according to their context, according to their capacity. 

So we don’t bring in a legal team, they have their own local version of congress. It’s their legislators that past the local law. It takes a while. In the beginning we would partner with them, do training, do everything, and then the law is happening simultaneously. But this time we don’t begin until the law is in place because they might forget to pass that law if we’re done with everything. Not that we ever divorce them, we’re married to them forever, always trying to update them and keep their programme relevant and responsive.

But yes, they do pass a law. It can take up to a year or more, but we do wait because that law is very important. It keeps the programme going, it’s permanent and sustainable. Some of our partners even put patient navigation on a separate local ordinance so it’s really binding.

What are some of the successes of these local programmes?

We’ve had studies done, whether focus group discussions, some are quantitative or qualitative. But, just offhand, the gains of the programme are there’s less fear to go to the community health centre for a check-up, which also means there’s more confidence in the city that they will be helped financially. Because the fear or the delays in care boils down to two, for me it’s the myth that cancer is a death sentence and, secondly, it’s financial catastrophe – no-one is there to help them. So if you eliminate those barriers then they go for a check-up. 

These women, a lot of them have awareness but they’re just very smart about their resource as they know they don’t have a lot and they have to start setting aside for the family if they think there is no-one who can really help them through their cancer journey. Cities who partner with us, people are doing check-ups, are doing breast self-examinations religiously, they’re catching their cancers at an earlier stage. Out of pocket expenses is very minimal, sometimes next to zero for cities that we have partnered with. So other women who live in other cities will not be getting the same advantage.

What overall conclusions would you give to other countries?

Our foundation, the ICanServe Foundation, is mostly made up of breast cancer survivors. Again, when you say you put the patient voice in the centre, it’s not just about their care but also they can be partners in policy, they can have a table in decision-making and governance when it comes to health-related programmes. Still I find that a lot of patient participation is still a token, it should be taken seriously and we’re not just consulted but really given a vote on the table. 

So we proved this when we passed the cancer law, the majority of those who lobbied for it were cancer survivors, including their carers, their families, their relatives. Even though we passed that law, when we had a meeting for implementing the rules and regulations, the list of people, they were all doctors. When I saw the list I’m like, ‘After the law, beautifully crafted, where are the cancer survivors in this meeting?’ and I had to insert myself. So we’re always trying to do that and we shouldn’t have to do that. All this fuss is about us and for us. 

Partner with patient leaders, they have the near perfect empathy for the people you need to serve. For patient groups, or just NGOs, you don’t need to wait for national government to move. They are saddled with other problems, they can also be slow, yes, they’re very bulky. It takes too long for them to get in front of the problem so do what you can whenever you can. Always partnerships, we can never do it alone, we have to partner with so many groups, whether social civic organisations like Rotary, Zonta, schools, churches and, of course, national government, other hospitals; it works that way. Even other patient groups. Down south in the Philippines we got a local law passed for the Ating Dibdibin programme with the help of a local group that helped us court this city for ten years. So it really takes a village, that cliché.

I also learned that patients should realise that they have superpowers and it’s not just peer to peer counselling. They can go beyond that, they can actually effect and empower changes nationally. A lot of revolutionary change doesn’t happen up but down among collectives, NGOs, smaller groups who try to think out of the box out of desperation. In our case we’re losing too many friends, people who could have been saved but didn’t know they could or couldn’t afford. So that’s why we lobby harder and have a more sense of urgency. But we do acknowledge that we need to partner with experts, we are not the experts, but the patient experience is our expertise which should not be neglected.