Fatima Lorenzo, Patient Advocate
President, Philippines Alliance of Patient Organisations (PAPO)
Co-Founder & Executive Director, Kythe Foundation
Can you introduce yourself briefly and share your connection to patient engagement?
Fatima: I am Fatima Lorenzo and am currently the president of the Philippines Alliance of Patient Organisation (PAPO). I am also the co-founder and executive of the Kythe Foundation. The Kythe Foundation is an NGO which cares for children with cancer. In PAPO, our main stakeholders are patient leaders. What we do is increase the capacity of patient leaders so that they are able to engage policy makers and be really involved and engaged in policy making, in giving feedback, and also helping the members understand the health system in the Philippines.
From your perspective, what does a sustainable health system mean to you?
Fatima: A sustainable health system for me should have these factors present: first, there should be institutional accountability, especially for the Department of Health. They should be able to financially account for every programme that they implement. Another one is strategic perspective and plan. Because it can’t just be on a whim or dependent on the leader, they should have a blueprint for the health system and promote primary health, health seeking and health values and very important is good leadership. Patient groups have a key role in helping their institution become accountable and responsive to the patient needs. Here in PAPO we continuously give feedback and at times pushback in expanding the frontiers of the health systems so we collaborate.
In what ways are patients are being engaged either in your own country or other countries?
Fatima: In Philippines, we are part of technical working groups. When we are invited by the Department of Health or PhilHealth, we patiently attend. We sit at the table, and we present the patients’ point of view. We are unsure if we are really being listened to but then we comfort ourselves as patient leaders, that it is important to keep our presence felt because when there is a new leadership and a new policy, at that time, they know there is already a patient group that they can go to. Let’s just be there, let’s just persevere and make our presence felt and some day we will be valued for who we are.
You’ve mentioned some of the ways that you’re being engaged in the technical working groups but what more do you think can be done?
Fatima: I think from the government, the institutionalisation of having patient groups at the table should happen because right now it’s only by invitation. It is not a policy yet. In our health technology assessment, there is a need to consult patient groups. In clinical trials, now we are getting invitations that patient groups have to be there. So it’s getting there but we want it to be present in all the departments of health, in congress, and even in FDA, so at least it’s institutional.
What can multistakeholder regional platforms like CAPE do to support advancing patient engagement in Asia?
Fatima: We have to have scorecards, even as patient groups. That’s something that we have not established yet and maybe I’m going to ask if CAPE can help us do this. It’s been in our plans to have a scorecard, but we want it in such a way that the stakeholders agree on this scorecard so that we’re all on the same page and then we’re all moving towards the same goal. So maybe that’s one thing that I hope CAPE will consider to help us patient leaders come up with a health systems scorecard which will be acceptable by our Department of Health and by our government leaders.