Ritu Jain, Patient Advocate and Caregiver
Dystrophic Epidermolysis Bullosa Research Association (DEBRA),  Singapore
Asia-Pacific Alliance of Rare Disease Organisations (APARDO)

Can you introduce yourself briefly and share your connection to patient engagement?

Ritu: I’m Ritu Jain, based in Singapore, and am President of DEBRA Singapore, the Patient Support Organisation for those living with the rare genetic skin disorder called Epidermolysis Bullosa (EB). I am also the mother of a daughter with EB and in that capacity I work with a few regional and global organisations that support people living with rare disorders. I work with Rare Diseases International, the Asia-Pacific Alliance of Rare Disease Organisations and others. In all these organisations, we aim to support people living with rare disorders by getting access to information and access to healthcare but at the same time we also work with NGOs and governments and help to promote the establishments of rare disease policies especially in this part of the world.

From your perspective what does a sustainable health system mean to you?

Ritu: Rare diseases really are a bit of a different kettle of fish in the healthcare ecosystem and unlike the more general (if we can call them that) conditions or diseases. Rare Diseases are really ones that require a multisystem approach. We need to examine all aspects of healthcare when we are looking at rare conditions. It’s not simply the patient and the care provider. A  multisystem solution is essential with integrated, holistic healthcare which comprises not just access to clinical care or access to healthcare professionals but also consideration of reimbursement and insurance pathways for patients, focus on Research & Development, affordability, essentially, all aspects of healthcare.  

How can patient engagement can support sustainable health systems?

Ritu: Given the rarity of most rare disorders, the term itself is ‘Rare Diseases’, and healthcare professionals often don’t get to see a lot of patients, and therefore there isn’t enough knowledge or expertise. As a results, patients are often actually experts in their own conditions because of accessibility of information or investment of their entire time and energy into learning more about their conditions and access to support groups.  Patients have a very high degree of knowledge and information and expertise around their own conditions so in order to really effect change for people living with Rare Diseases, it’s critical to engage them because they know more about their conditions than anyone else does. For example, around EB research often includes patients because patients help researchers decide priorities in research. Should it be finding a cure? Should it be finding solutions around wound healing, or even aspects of what’s more important, as some patients will tell you their priority is reduction of itch compared to some patient populations who hope for a cure.
 

Can you give some examples of how patients are being engaged either in your own country or other countries?

Ritu: Patient engagement is quite an overlooked area in the Asia-Pacific region but we do have some green shoots of initiatives around the region. In the Asia-Pacific, we do see some green shoots of patient engagement despite the great oversight of patients in rare disease work or even in health systems around rare diseases. In Singapore, we do have the establishment of Singapore Patient Advocacy Network (SPAN) and this is a really great initiative in bringing patient voices into health systems but we need to go beyond otherwise we just end up having token representation of patients in our health systems. In Taiwan, you have patients as part of their panels taking reimbursement decisions around rare disease drugs. Another example of Rare Disease patient engagement is the work that DEBRA itself is doing. We, at the patient level, are not only working with clinicians in Singapore, but also researchers, so we’ve helped to successfully initiate clinical trials around EB drugs in Singapore. Currently, we are part of a research process around collecting data on quality of life and socioeconomic burden of living with rare skin disorders. Beyond national or regional level, let me give you a great example around the work we are doing with our international organisations such as with Rare Diseases International (RDI). I’m really proud to draw attention to the MOU that RDI has signed with the World Health Organisation (WHO). This is the first ever collaboration of the WHO with the patient community organisation and through this partnership, we aim to shape international rare diseases policy and strengthen the capacity of health systems to address rare diseases. So there are multiple initiatives that are happening around the region and around the world but these are initial steps and we need a lot of work for these initiatives to translate into a positive difference for people with rare disorders.

What more do you think can be done to enhance patient engagement?

Ritu: What more can be done is, if I can just continue from my previous response, is to go beyond these token representations that might be happening in some parts of the world of simply giving patients a designation, or a seat at the table but then the next step is that we need to take their opinions seriously. We need to give them the respect that is due to them as experts in their own conditions. I’m not saying that patients should be put in the driver’s seat of their care but I’m saying that patient voices should be taken seriously in all aspects of the health eco-system. Patients should have the right and should have the voice in decision-making around research priorities in healthcare and reimbursement of drugs and devices for rare disorders in even the kind of healthcare systems they want to see, what kind of healthcare professionals do they want access to, do they want clinicians or healthcare experts, or do they want community nurses, do they prefer healthcare in a hospital or clinic or do they prefer home care? So these are aspects that really make a difference to patients and giving them a voice empowers them and translates into positive outcomes.

Any advice for how you think CAPE can support patients to really get this message across, what can we do to connect everyone who needs to hear this message?

Ritu: I think CAPE at Duke-NUS is really a great example of promoting patient engagement. I think this is a very promising and, in my experience, has already been pretty sustainable. CoRE has been continuing  this engagement with patient organisation so it’s not just a flash and pan and it gives me great hope because Duke-NUS enjoys the credibility of the government as well as the patient organisations, and offers a non-partisan, neutral, credible platform to connect various stakeholders, healthcare professionals, researchers, patient organisations, pharmaceutical companies, those are very, very important stakeholders in the health ecosystem. So I think if CAPE could just continue this kind of engagement, especially given that this is a region that has been traditionally overlooked, I think what CAPE is doing is really promising. I sincerely mean it and I hope that we can continue on this mode of engagement. It’s going to be a remarkable gamechanger in the region.