What I would like to propose for the meeting is talking about how patient support groups, civil societies in general, they are doing a lot of good work. I would like to publicise how tools can be used to measure impact and also to monitor the implementation of programmes by these patient support groups and civil societies. For a long time many civil societies have been doing a lot of work, activity, all along the cancer continuum, from prevention, intervention, supportive care and so on, but many times the activities are not measured in the sense that we are not measuring impact. I’m very passionate about promoting how scientifically developed tools can be used to measure those activities in terms of how well the activities or interventions are working. Also for monitoring and evaluation, just to illustrate the usefulness.
Among the tools that I would like to propose that patient support groups use are needs assessment. When we are counselling patients, when we are doing something for patients, we may want to use needs assessment tools to assess the level of needs the patients have and after the intervention to what extent the unmet needs have been changed to a needs set which have been fulfilled.
Likewise, we can also use quality of life assessments and measuring happiness in patients. So these are things that I’m working on and I would like to share with many of the patient support groups and civil societies and share experience on how they can be used to leverage for change. Also to go to policy makers and say, ‘Look, I’ve done this and with this I need more resources.’ You can only do that if you are able to show some numbers to policy makers. So that’s it in a nutshell; it was quite long, but that’s it.
Can you give some examples of how this approach has worked in Malaysia?
The things that we realised is our supportive care system for cancer is not systematic, so it’s done on an ad hoc basis. Most of the supportive care for people with cancer is delivered in the hospitals but it’s very much related to side effects of treatment and pain management and so on. But once the patient finishes the treatment and transitions back into the community the supportive care framework is very patchy, it’s done by different people. Of course then the civil societies come in and they also provide some sort of supportive care, be it psychosocial, financial to some extent. But we are unable to show how those programmes or interventions that are being given by various stakeholders, including from the clinical side or the community side, how do we show that we have changed something for patients.
Most of the outputs that we measure are process outputs – the number of patients seen, the number of interventions, those sorts of things. So one of the things that our team did was we developed a needs assessment tool and we started off with breast cancer and then we moved on for colorectal cancer. So we have tools which are specific for people with these conditions and now we are trying to develop tools also for all people with cancer. So the whole idea is when we see the patients at the beginning, be it waiting in the hospital for the appointments or during the encounter with staff from the NGOs, for instance, we could assess, administer those questions, and see which are the areas in that particular patient’s life where they need assistance. It can range from they need psychosocial counselling but it also can mean that they have some sexual difficulties.
Most often in the Asian culture what happens is that people are shy to talk about their problems. But if they have a questionnaire and the questionnaire is in their own language, worded in a non-scientific way, so our questionnaires are very much the language is not according to grammar but more so to how the patients relate. So they are given those questionnaires and they are asked to answer those questionnaires. The person who is attending to that patient can evaluate and immediately decide which area needs attention for that particular patient and then connect the patient to the right resources.
So the tool can aid as a quick ‘diagnostic’ screening kind of tool but also once an intervention is addressed, maybe down the line, we can repeat the administration of the tools and you can see how the scores for the patients come down or go up. Then we know are we doing the right thing or have we solved this problem and now the patient has got a second pressing problem that we can go to. We can also see that, oh, the patients need this but we do not have any resources to support in this area which also acts to flag what we need to create or what we need to do better to help patients. So it serves multiple purposes.
By using such tools, like the needs assessment tool for a beginning, can be a very good thing, not only for patients, for that one patient, but also as a whole for the health system’s benefit from that, including the community players. So that’s how we fit in into the care and better cancer control in the region.
What would be your message to epidemiologists on the importance of considering psychosocial factors?
I did my training and I trained as a clinical epidemiologist. So when I came back from training, a lot of the work I was doing was looking at effectiveness of cancer therapy A, comparing two treatment options and how patients do in terms of living longer. I never looked at living better, it was always living longer, looking at duration and blah, blah, blah. But then I had the opportunity to lead a study where we looked at the economic impact of cancer in South-East Asia. So, many of the people know about the study, it’s called ACTION. After that I converted, so from treatment outcomes I moved to patient-centred outcomes.
Of course, we wanted to look at patient-centred outcomes also in a very scientific manner. But, as we speak to patients we realise that a lot of the tools that we use are measuring quality of life but patients have got their social life, that’s where all the happiness, how people cope, social support, these are things that are usually not measured in clinical settings and by epidemiologists. So I moved on to do a lot of qualitative work talking to patients. That’s how I am today, it’s very different from where I started but I feel that this is what we need to address, looking at the social aspects of patients, then we will be able to solve the clinical problems as well.
So that’s why I started off saying I’m a clinical epidemiologist and then slowly I called myself an epidemiologist and then I realised that public health physician fits it best because we do holistic management of patients. So right now I tend to call myself, I’m a public health physician, clinical epidemiologist goes to the back. So that explains why it’s a bit unusual but I think it’s necessary.
So I’m also saying out to all epidemiologists out there don’t be afraid to step into the non-scientific pathway because a lot of people call the social aspects of care not so scientific but it’s wrong. It’s actually scientific and we need to make it scientific so that it’s measurable, to influence policy makers. They need numbers.
Do you have any advice on how to engage with policy makers?
Be more scientific, and that’s why you need tools, you need to show numbers. Because it’s good to have patient stories, I know it’s very powerful, especially when we are having some meetings, it’s always traditional or in fashion to call a patient to tell their story. It’s very powerful but it’s also powerful if we are able to collectively present experiences from a group of patients with numbers. For that you need survey questionnaires and so on. That’s why you need to make sure that whatever you are planning, part of that planning for the intervention should include monitoring and evaluation. For monitoring and evaluation we need questionnaires, we need tools. So be more scientific, that’s my message for patient support groups.
