Ai Ling, Patient Advocate & Breast Cancer Survivor
Co-Chair SingHealth Patient Advocacy Network (SPAN)
Global Patient and Family Advisory Board Member, Beryl Institute
Can you introduce yourself briefly and share your connection to patient engagement?
Ai Ling: I’m a breast cancer survivor and Co-chair of the SingHealth Patient Advocacy Network (SPAN) which is part of Singhealth, Singapore’s largest public healthcare group. I am also a member of the Beryl Institute Global Patient and Family Advisory Board. Besides the advocacy work that I do, I am involved in palliative care charities, helping to fulfil wishes for terminally ill patients. My profession is in healthcare communications, and this is something that I will continue to do as I am glad to be able to integrate my professional work with my patient advocacy work as well.
From your perspective, what does a sustainable health system mean to you?
Ai Ling: Good question, a sustainable healthcare system, I would say, essentially boils down to being accessible and affordable to the population that you serve. Firstly, the population that you serve should have access to the care and treatment that they need. Secondly, the treatment must be affordable. If it is very expensive to access, or expensive for the population, then I don’t think that is sustainable in the long term.
How do you think patient engagement can support sustainable health systems?
Ai Ling: So to have a sustainable healthcare system, you need to understand what really matters to the patient, and that is where patient engagement comes in. I see patient engagement in two different thrusts. The first thrust is during interaction between the patient and the clinician (nurse or doctor) in the clinic. They are being engaged on their care and there is a shared decision-making, there is proper informed consent, and the doctor and the nurse know what matters to the patient for the particular treatment. So that is patient engagement at the more localised level. Then you have patient engagement on a more systematic, organisational level. Whenever you are working on a project to improve healthcare, be it patient experience, quality, patient safety, if your end-user is going to be a patient, then engage the patients or the families to be part of this journey to help them co-create, co-design, this new initiative that you have. And I want to add on here, it’s not just about patients, I want to emphasise on involving families as well because as we all know, when we are sick, our families would be with us throughout that journey and their requirements and needs are sometimes different from the patient and sometimes we forget about them. We need family members to be in the picture too, so we need to talk about how you can also involve them in this whole engagement so it is patient and family engagement, not just patient engagement.
In what ways are patients and families already being engaged in your own health system from your experience?
Ai Ling: Patients and families are important to SPAN, so within SPAN itself, our members are both patient advocates and family advocates. For example, we have someone who is a caregiver to his mother with advanced dementia, and we have another advocate who is caring for her daughter. So we have several members who are here because of their caregiving role and we work with them and or seek their advice when we undertake healthcare improvement projects. This is what we do in SPAN and we make it a point that whenever we do any project, we involve both patients and families in the discussion.
How are you building the capacity of advocates, I know you have very strong education programmes you’re running as well?
Ai Ling: We started SPAN about 4 – 5 years ago and patient advocacy in Singapore was a green field back then. We did not have a similar organisation here so when we first started, we frankly had little idea how we were going to grow this but I would say I am very grateful for a lot of generous sharing from across the world. Many people have shared their experience about patient engagement and advocacy on their websites, so we learnt from their best practices. At the same time, we also looked at what is needed here on the ground. And I think we were fortunate in the sense that we had the right people at the right time.
First of all, we have leaders within SingHealth who believe in this and wanted to invest in it. Not invest in terms of money only, but really invest in their time and effort to get this started. We have a guiding coalition of certain partners within SingHealth itself that came together to grow this so I think that’s important. It is not just a patient advocate saying “ Hey I want to set up something, let me get it started”. It was more about partnering with healthcare professionals, healthcare teams within your system, which in this case were the leaders of our organisation. They decided what was needed and they brought in a guiding coalition comprising of the Institute of Patient Safety and Quality, the Office of Patient Experience as well as the Nursing group as these are the people whom you know would usually be very much involved in patient engagement work. They came together to build and grow the patient advocacy in SingHealth. It was important to bring in committed and passionate patient advocates to start with. Our pioneer group is made up of a small group of people who are committed to this vision and willing to work towards it.
The second aspect is really the culture. To grow patient advocacy, especially when it’s new, you need to grow a culture both within SPAN and also within the SingHealth organisation. When I talk about within SPAN, it’s about having the culture where the patient advocates would want to contribute, and I think it was very wise that the SPAN secretariat and SPAN advisors decided very early on when it started that the guiding principle should be empowerment and co-creating with the patient advocates. So to me, this is actually the critical factor because as a patient advocate, I feel that this is something I have a stake in and want to be part of. I saw the sincerity and commitment from the team and I could see they really wanted to make it work. So that’s why I also poured my heart and soul in, to help this grow. This guiding principle of partner with patient advocates is very important to get the project off the ground.
Making patient engagement part of the culture is so very important, so that listening to the patient’s voice is embedded within the culture of your organisation. This is something that we always say: we have to listen to patients and we have to engage with patients. I know this because I used to work as a healthcare professional before I became a patient myself, so we know that is the right thing to do, but I think in our day to day business, sometimes we may give a more cursory kind of treatment towards it. For instance, how do we include the patient’s voice in my healthcare improvement project? Not everybody knows how to do that, and maybe there’s also effort and time that is needed. So that’s what we have been doing in SPAN as well; to help create the resources and education awareness, to help healthcare professionals by giving them the needed resources to engage patients in a structured manner.
We do that through webinars, though toolkits that we have created, through talks, so these are some of the things that we have done and by doing so, we also are embedding patient engagement within the system itself. For example, I know that in SingHealth they started to put in some of the criteria for certain conferences, or research posters where you have to an element of patient engagement. So that is how we are building the culture and systems, so that patient engagement becomes really part of the organisation.
What more do you think can be done to enhance patient engagement?
Ai Ling: I think we have just started this journey and I’m glad that we are making good inroads. However, there is still a lot to be done in many areas. Looking at it from the patient advocate’s perspectives, there is still more to be done in terms of competency building for our own patient advocates, and recruiting more patient advocates as we need a diversity of voices from all age groups, all backgrounds, and medical conditions. As we recruit more people we can hear diverse voices and together we continue to grow skills and knowledge so that they can contribute towards this conversation and partnership with the healthcare teams. We also need to do more in terms of projects; working together with the healthcare teams, especially in terms of co-creating and co-developing with them. We do have some projects at this level of engagement but not all projects are the same. In some projects the engagements are simpler and there is less of a co-creation element but I think as we all know and we have heard, not just here but in many centres all over the world, when you want to create a programme in healthcare that is really transformative and really works for the patients, you need to co-create it with them. So I would like to work more towards that together with the healthcare teams that we started with, from day one. Additionally, we need to build a lot of awareness as well as competency training from both sides, both patient advocates as well as healthcare professionals. There is also another area of research because in healthcare we always talk about evidence, so it is important, to show the evidence that, this patient engagement work does improve healthcare. So I hope we can create more research to show how patient engagement and patient advocacy can contribute to better health outcomes.
Any advice for what multistakeholder regional platforms like CAPE do to support advancing patient engagement in Asia?
Ai Ling: There are two things I hope CAPE can do to help support patient engagement. The first is about building competency, not only for the patient advocates but also for the healthcare professionals and the healthcare regulators. And when I say competency, for the patient advocates it refers to- how do you contribute in these forums, how do you do Health Technology Assessments, how do you bring across a point effectively. For professionals and regulators, I think more needs to be done on how you can engage patient advocates and family advocates, what are some of the tools you can use, how do you communicate, what you need to do, basically, the toolkit. So I think we need to have more training and workshops to help them to be able to engage the patient and family advocates so that both sides can talk. The second point is actually related to the first point, I think what CAPE can do is to create this forum for conversations between the various parties. It’s only through frank and honest conversations that we get insights resulting in change and transformation. So we need to be able to have CAPE to create these forums of conversations between all the various parties so that we can help to grow this patient engagement across Singapore and Asia-Pacific.