This Biome podcast accompanies the Participatory Medicine article collection in Genome Medicine.
In this episode we’re looking at participatory medicine – a model of medical care where patients are encouraged to act as partners with clinicians, and take a more active role in their healthcare.
The podcast accompanies an article series, available online at genomemedicine.com, exploring how high-throughput technologies are promoting this paradigm shift in healthcare.
In Participatory Medicine, clinician and patient are part of the same team. Patients are empowered by more available information, and take a more active and responsible role, while clinicians welcome them as knowledgeable partners in clinical practice.
In this podcast we’ll learn how and why this change in model of healthcare is taking place, how relationships between the main stakeholders are being reshaped and what challenges participatory medicine still has to face.
First of all, what is happening with the current healthcare model, and what impact will this have worldwide? This is exactly what we’ve asked one of the Guest Editors of the series, Leroy Hood from the Institute for Systems Biology, Seattle, USA.
LH: I’d say, first of all, there is a big revolution coming in healthcare. I call that revolution systems medicine, or P4 medicine, or personalised medicine. In a sense, they’re all variations on a theme.
I, from day one, said “It must be a worldwide transformation”. I think there are a lot of arguments for why that is going to be so. I’ll give you just one. We’re now beginning to see a digitalisation of measurements in medicine and what happens with digitalisation is those measurements become incredibly inexpensive. We can look at communications: a woman now can make a living in a small rural village in India for her family, using a cell phone. That’s a digitised form of communication that’s really cheap. I think we’re going to have – in ten years – a digitised form of medicine that is really cheap and can be exported to the developing world as well as to the developed world. Frankly, I think it’s going to open up the possibility for a democratisation of healthcare that was inconceivable to think about even five years ago.
As Hood points out, all these changes are driving medicine to be predictive, personalised, preventative and participatory… P4 Medicine. We’ve also asked Hood what is the role of Participatory Medicine component and what questions is it raising?
LH: I would say that the personalised medicine has really four components, and the “participatory” is the fourth component and it’s far the most difficult. It deals with questions like: One – how do we educate patients, physicians and the medical community as to this new personalised medicine? It raises questions about: How do we gather the data of personalised medicine from these patients, so we can mine it for the predictive medicine of the future? This runs in the IRBs and all the constraints that exist today.
A third aspect of participatory medicine is my deep conviction that patient activated social networks are really going to be the key for driving personalised P4 medicine into the healthcare system. So there come up questions about: How do we create these networks and how can we design them so they can be educational to the patients, but at the same time they can experience crowd sourcing – that is, learning by being a part of a network. And I think a fourth area of participatory medicine really relates to the fact, in a relatively short period of time, every patient is going to have a virtual data cloud of billions of data points, and we’ll have the wherewithal to reduce that data dimensionality to models about how to optimise wellness and minimise disease for each individual.
So the participatory aspect of medicine is a social aspect, and how we bring it into the healthcare system.
Another aspect that is driving the shift in medicine towards a more personalized model is the availability of the technology to perform ‘omics profiling. Here’s Myke Snyder, Director of the Stanford Center for Genomics and Personalized Medicine, and a pioneer in the field, telling us exactly what ‘omics profiling is.
MS: What is personal omics profiling? Well, it really involves trying to bring as many measurements as possible, with the goal of trying to understand a heath state at incredible detail, that’s never been seen before. The ultimate goal is to be able to make measurements on people, so that you can have a much clearer understanding of what they’re at risk for and what diseases they may be on the verge of getting, and then to be able to catch disease and monitor disease early.
What does it involve? It involves sequencing someone’s genome to predict their risk, it involves actually determining their DNA methylome in its most complete form; it’s determining their DNA methylome, their transcriptome, their proteome, their metabolome, their autoantibodyome, their microbiome in many different locations in the body. So we’re trying to get a very complete picture of what a person’s molecular state is. As I say, the goal is really to have a very detailed assessment of a physiological state, so that then we can catch that state when it goes aberrant – that is to say when someone’s either on the verge of getting a disease or has a predisposition for disease.
Quite frankly, in my world I think this would all be set up at a home test. That is, you would do something like once a month. You might prick your finger and make literally thousands of measurements that would assess your health state. That’s how I would like to see the whole thing go. Rather than go to the doctor’s every two to three years and get a standard medical test as is now currently performed, which to my mind is just woefully inadequate. We really need more frequent tests with much more comprehensive tests to follow someone’s health state.
So, as patients are gaining more autonomy and responsibility over their own health, the role of patient advocacy groups comes to the forefront. We’ve asked Kim Norris, President and co-founder of the Lung Cancer Foundation of America what the role of patient advocacy groups is in these changing times.
KN: I think all the advocacy organisations can play a very, very important role in one, educating themselves, educating their patients and their constituents, working closely with the researchers to make sure that information gets out to the lung cancer community and also stepping up in case there are any regulatory issues that may be getting in the way to stop or hinder the profiling or the genomic testing. I think this applies to just about any disease-specific advocacy organisation.
I can only speak about lung cancer, but in lung cancer the whole notion of targeted therapy or personalised medicine is happening so rapidly and it’s very exciting.
What’s interesting about that is that all came about through the Cancer Genome Project, and luckily lung cancer was one of the first cancers that was targeted to have the Cancer Genome Project done. That has provided a wealth of information for researchers. So what we now know is – whereas before if you had lung cancer, you’d just get chemo and it was all one-size-fits-all – as I’m sure you know, today what is going on is we realise that everybody’s tumour is unique and has unique characteristics to it. By identifying those unique characteristics, the genomic profile of your tumour, we can then develop and create a targeted therapy; a therapy that goes after the unique mutations of your tumour.
The role of the advocacy organisations, I think, now becomes critical. Because although this information is mostly known throughout the academia world, 85 percent of patients, if not more, are treated out in community hospitals and do not have access to academic centres. This information about getting one’s tumour tested for its genomic profiling is very, very important to one’s treatment options and these community hospitals and community oncologists, primary care physicians, just do not seem to know yet – the word hasn’t permeated out there – that every lung cancer patient’s tumour should be tested, as far as I’m concerned, for its genomic mutations. I think that’s where the advocacy organisations can come in: to help educate patients, to be a liaison of information between the research community and the patient-family community, to help educate and make people aware of the options. Then also to help work with community hospitals and organisations and doctors and specialists, about the importance of getting one’s tumour tested. So I think the role of the advocacy organisations is really at a pivotal point right now, and actually very exciting.
As participatory medicine develops, the relationships between the main stakeholders in healthcare – doctors, researchers, patients, and patient advocacy groups – are being reshaped. We’ve asked Mike Snyder, who has a unique view as a researcher and research participant, what the main implications are of this?
MS: So I think doctors on the one hand will become coordinators of your healthcare; they’re going to have to work with genomicists, who’ll be interpreting your DNA, they’ll have to work with specialists who based on your DNA – your omics profile – think that, you know, you should be seeing a cardiologist or a nutritionist for your metabolic conditions – that sort of thing. And then I also, as I said before, I think it’s really going to also shift to the patient. Because nobody has the time to spend on your health like you do.
Just as example, now what happens is if someone in my family gets sick the first thing they seem to do is to contact me, even though I’m a PhD and don’t necessarily know what the right thing to do is. I do what almost everybody does in that situation: I start Googling things up and then learn a bit about it and then I also talk to my colleagues – that’s one advantage I have over others – but the point is that you actually have to draw in a lot of this information yourself and that’s what patients are currently doing whenever they fall ill to some disease they can’t figure out right away, whether it’s cancer or any sort of disease. The patient really has to step up a lot more and the role of the physician will be to help coordinate that process, in my mind: make sure that they’re seeing the right people, they’re getting the right advice, so that the patient can be essentially steered in proper directions. So I think the roles will shift quite a bit as we move forward in the future.
As a patient advocate Kim Norris’ also has an insight into the changing roles of patients in the time of personalized medicine.
KN: I think it is critical now for patients to be more involved, more engaged in their disease and what’s going on. I think gone are the days where your primary care physician or your single doctor that you’ve been seeing for 30-40 years knows all. There’s so much that happens in research and in medicine that it’s impossible for a single person to be knowledgeable of everything. So I think the patient now needs to go in to their doctor’s armed with the right questions, armed with the right knowledge and information. Don’t be afraid to challenge.
Although there are several things driving this change in healthcare model, this process still has many challenges to face, and we asked Norris, which challenges would be the most difficult to overcome.
I think this model of healthcare still has many challenges to overcome. At least here in the United States, a lot of it is just the issue of insurance and healthcare. I know that’s not true for other countries but what insurance will cover and not cover, in terms of the genomic profiling, is difficult. So I think oftentimes what is happening is faster than the societal model that goes around it.
Mike Snyder also has some concerns…
MS: I’d say the biggest challenges are funding – so we need funding on the research side to be able to roll out these pilot studies like the one that we’ve launched. And then later we’re going to need a good reimbursement model; we need a model by which patients are reimbursed from being able to get their exomes and their genomes sequenced. I see a world where people should actually get a discount for getting their genome sequenced – a discount on their healthcare – because I think they would be able to better catch diseases and follow the sorts of things they should and shouldn’t be doing. We haven’t hit that yet because the way our financial system is set up doesn’t really reward us properly for that. In principle, that’s actually what should happen because people who get their exome sequenced, or their genome, will be able to better follow their risks and make adjustments accordingly and catch disease early. But we don’t have a reimbursement system that lets that happen right now.
So it’s clear that there are significant challenges to overcome for participatory medicine.
Lee Hood has been leading the way in this change in healthcare and he identified other challenging aspects, but also gave an example why he thinks Participatory Medicine would be the way of the future.
LH: I think that participatory medicine still faces many challenges. Most physicians don’t know what it is, the healthcare system itself is incredibly conservative, the payers don’t quite understand participatory medicine and they’re not going to accept it unless you not only prove you can improve healthcare but you can make it cheaper as well.
So I think in every dimension, the system is going to be resistant to change. Questions of how you educate the patients as well as the physicians and they system itself. The questions of how we can gain access to the data so we can use the Big Data of the individual patients to create the predictive and preventative medicine of the future, I think, is really critical. How are we going to create an IT for healthcare system that deals with the enormous complexity of personal data clouds and so forth. These are all challenges.
I think it’s going to be enormously cost effective, and I can give you a nice example. I created a company called Integrated Diagnostics about five years ago, and its mandate was to use systems approaches to identify panels of diagnostic biomarkers for disease. Recently we’ve identified a panel of 13 biomarkers that gives us the ability, in lung cancer, to distinguish patients that have benign nodules from those that have neoplastic nodules. Since many surgical procedures are done on patients with benign nodules, the estimated cost savings – if this test were used widely for the American healthcare system, since we see 3 million nodules a year in the system – is about 3.5 billion dollars. So that’s a beautiful example of where systems medicine – or P4 medicine – has created a diagnostic that improves healthcare and significantly reduces the cost of healthcare.
Although there are still challenges to overcome the paradigm shift in healthcare is already taking place and it is no doubt very exciting that medicine is moving toward a participatory model.
With thanks to Leroy Hood, Mike Snyder and Kim Norris.
The Participatory Medicine series is available online at http://genomemedicine.com/series/participatory