Towards a discovery network
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Jan Gerrit Schuurman
In this series the Inspire2Live program and how it develops is recounted. This time a key element of the program is described: the Discovery Machine is its nickname. Coen van Veenendaal and Jan Gerrit Schuurman met with José Baselga in Boston, who expressed the need for this kind of system. They met José in May and in September 2011.
As a founding document, this account will evolve. In the blog it will be saved unscathed.
The crucial question that must be answered is ‘How can we get cancer under control faster?’ A key aspect of this goal is that we will have to be more efficient in translating new basic insights into more effective therapeutic regimen.
From: Understanding Life: Program plan
Introduction
Everybody can get cancer. About 40% of the people will get cancer. Of some people we know that the likelihood that they will get cancer is even higher. We want people who can get cancer better connected. But why should people become better connected? Because we know that people and groups who are better connected, fare better. Likewise we want the people better connected who do cancer research, and treat cancer, who care for the cancer patients and for the survivors of cancer. Why? Because we know that those who are better connected do better. The question is: how do they fare better and how do they do better?
This is the bread and butter of the social capital metaphor. In cancer research and cancer treatment the organization of the social capital is a rate-limiting step. And we must find the means to overcome this limit. Else we will not succeed to do what is needed to get cancer under control in the next 10 years. But we also must turn the social capital metaphor into something real and something that will make the difference!
The Discovery Machine is about the creation of such a real thing. The Discovery Machine creates an open environment for those who are in this structure to pursue a common goal and to better reach that common goal. The common goal is to improve the treatment of cancer. People and patients are part of this open environment.
This document is about the Discovery Machine and the human brains which use it and are connected via that Machine. The Discovery Machine will facilitate at least three levels of cooperation in the area of cancer research and treatment.
Better sharing of better observations
Better utilisation of better treatments
Better organisation of better networks
To function as a full-blown information science, with connected brains, the Discovery Machine must incorporate all three levels of cooperation. An inherent problem in this kind of system is that the Discovery Machine must enable the need for both openness to novelty and closure when disciplined research and/or treatment regimens are required.
The vision
In the fight against cancer, both patients and their loved ones feel a huge sense of helplessness. Cancer is everywhere. Fighting it seems pointless. More than one in three people develop cancer. Everyone involved has first hand experience of how dramatically their lives are affected and how destructive it can be.
Our International Foundation Inspire2Live was created with the aim to empower people to convert the sense of powerlessness, caused by cancer, into one of strength. We achieve this by motivating as many people as possible to constantly challenge and expand their boundaries. Inspire2Live created the program Understanding Life. The Discovery Machine is part of Understanding Life and aims to expand the boundaries of people.
The Discovery Machine
If the devil is in the details, then God is in the networks. The discovery machine is about details and networks.
With regard to cancer treatment, the devil is in the details. Without better sets of high quality observations (sequencing of the genome, imaging, quality of life indicators, et cetera) of groups of patients and individual patients, better treatments will not be discovered and utilised. In fact, without capturing ever better high quality data of treatment effects and sharing them, we will not be able to distinguish good from bad, better from worse or better from really better. And at some point strict regimens of diagnostics, treatment and the observation of treatment effects are necessary to make any progress at all.
At the end of the day, cancer treatments (combinations of drugs, combinations of therapies, chemotherapy, immunotherapy, operation, operating by cooking tumour tissue, et cetera) are central. Introducing better treatments also means adapting existing treatment regimen, and maybe more often that people are encouraged to believe so far, replacing existing regimen with better regimen at the level of well defined groups and in given cases, at the level of the individual patient.
But we also need better networks (research groups, cooperating institutes, teams of clinicians and lab researchers, et cetera). We need to change the way we work within and between groups of researchers, clinicians, engaged patient and all relevant others. Here data sharing and the fluent creation of problems focused networks of researchers, clinicians and engaged patients is crucial. Among other things, the system of incentives and the reward structures are decisive in encouraging the best forms of cooperation.
What is needed is a kind of hub connecting the relevant people and professionals, and this is the instrumental reason for creating the Discovery Machine. The notion of the Discovery Machine should be seen as the analogy to the search engine. The way a search engine is about search, the Discovery Machine is about discovery. About the discovery of better treatments: for groups and for individual patients.
The functions of the Discovery Machine
What is the Discovery Machine? The basics are simple. The implementation and the actual use will be a lot harder to specify. In fact, actual use is a discovery process in itself.
This is a high level functional account. We will enter the world of information science, because apart from the actual brains of people and the hardware, everything else should become exchangeable as information! For example, we will speak of tumour characterization. What those characteristics are, we will not specify. But the information pertaining to the tumour characterisation must be exchangeable.
- 1. The first element: The basic idea is that we create a machine, which supports the combination of ideas. This means: connecting brains and sharing all information that the brains need to reach the common goal: getting cancer under control.
- 2. The second element relates to better observations. High quality tumour characterizations will be needed. New imaging regimens, new imaging techniques, better reports and access to repositories will be necessary.
- 3. We need a map of all possibilities of treatments.
- 4. We need exchange with and connection to networks of scientists and clinicians, in order to screen cell lines. The networks include the people who operate the facilities to design animal models, screen drugs and set up first phase trials.
- 5. The kernel of the Discovery Machine enters here. Observations, treatments and networks must be matched. This is qua interfacing and technically the most challenging part. And we have to elaborate on this part.
- 6. Finally, the results must be studied in the population of patients. Results from this phase must also feed back into the Discovery Machine.
These are the six elements of the Discovery Machine.
We will next pay attention to the dynamics of using the Discovery Machine
Brokerage and closure
The notions of brokerage and closure were introduced by Ronald S. Burt from the University of Chicago (Burt, R.S., Brokerage and Closure, Oxford University Press, 2005).
Improvement ultimately means discovery, invention, development and implementation. Because new high quality observations, new high quality treatments and new high quality networks will have to be added to or replace the old sets of observations, treatments and networks.
Brokerage and closure is about this dynamic process of improvement. In fact, the Discovery Machine is an instance of an improvement system, ever open to falsifications over time, replacement of entrenched practices and better new ways of working, in principle ad infinitum.
The Discovery Machine is about improving networks, improving treatments and improving observations. Sadly many attempts to improve research and clinical practices are too narrow, too broad, or too metaphoric, given their claims. We believe that networks, treatments and observations together must be part of our pursuit. No more and no less.
Network brokerage: discovery within and between networks
Discovery never starts from scratch. We find ourselves in an intricate network of entrenched practices. It is in this network of practices that new discoveries will be found and a subset of those discoveries will come to fruition and gives way to a new generation of newly entrenched practices.
Brokerage is the active process of noticing discoveries, and bringing them to fruition. This often means that existing practices will require extension and in some cases substitution. Brokerage, in other words is about finding and creating new connections, testing new findings and when the right criteria are met, implementing them. This gives rise to closure.
Network closure: making a discovery into shared knowledge that will benefit the patient
The challenge of closure is twofold. First, execute what is known at some point and replace what is entrenched by what is better given some explicit criteria. The new knowns are the product of discovery.
Second, creating new networks and new treatment regimen can eventually be followed by new discoveries, new knowns and in some cases, opening an existing closure.
This may sound pretty abstract, but in essence it means that any improvement can be followed by further improvements. Therefore, entrenchment should remain open to change.
Making the difference
The challenge is clear. To improve the system of discovery and speed up implementation for patients, we have to expand on the boundaries of observations, treatments and networks. For the Discovery Machine to do what it claims, we must focus on all three.
The Discovery Machine connects brains and leaves to the brains what the brains are good at. It lets the machine do what the machine is good at. If the Discovery Machine is based on any trick, this is its basic trick. It is not an Artificially Intelligent system. The Intelligence is in the interaction between brains of real people. If the people stop thinking and stop interacting, no matter how complicated the machine, it will not make any difference at all. And this brings us to the human factor, the most important factor of all! Its driven by the emotion of helping the patients and their loved ones.
Conclusion: the central position of the human factor
The recent book about the patient of the 21st century makes the importance of the patient perspective very clear. See Gigerenzer, G. and Muir Gray, J.A. Better Doctors, Better Patients, Better Decsions, MIT Press, 2011.
We want to get cancer under control in ten years. At the core it is the patient who must benefit and it is the patient who is smothered, because of tight regulations, the bad reputation of big pharma with the public, bad information, deliberate misrepresentation of research results (for example, reporting relative improvements in percentages instead of real improvements in terms of absolute numbers), et cetera.
The human factor is the rate-limiting step. Only if we succeed to engage people, doctors and patients in our pursuit, we will be able to make real and ongoing progress in real time. That is the bottom line.
The Discovery Machine requires users who comply to a code of conduct. One important code of conduct relates to the way in which reward is shared. And speaking of human capital, metaphorically: conduct will ultimately determine the value we grant to the life and well being of human beings, who as a species must learn to live a happy and healthy life in harmony with cancer. And who as groups and as individuals will learn to control cancer better and better in real time.
3 Boys Blog (2)
The blog is about three boys, known as Pete, Erik and Jan. And in the best tradition of another three boys story, the Three Musketeers, there is a fourth villain who joins in: Johan van der Waal.
The sense of urgency
When bad things happen to people, and their lives are at stake, what do they do?
More in particular: what do people do if cancer is the bad thing?
Of course the individuals who are struck want to do what is right and continue a life worth living. But when disaster is immanent, people have to deal with all sorts of problems that make continuation of a good life tremendously hard, and clear headed decision making terribly difficult, if not impossible.
From the day you, one of your close relatives or friends is diagnosed with cancer, the stars in heaven will look differently. How long will you see the stars? How long will you share the joy of looking at the stars with your spouse, brother, sister mother, father or your best friend?
What to do in the face of such personal devastation? What may we reasonably demand from the healthcare system that we expect to support us? What, today and tomorrow, may we demand from a system that has the capacity to improve itself? And what may we or should we demand from ourselves in the face of personal devastation, when the bad thing is cancer?
The three boys are constantly asking these probing questions. Each does it in its own way and style. They are not the experts. But they meet the most brilliant people with different backgrounds on the subjects: cancer biologists, epidemiologists, clinicians, research psychologists.
The three boys have put forward the following question. What if you clinician and researcher, you have just 10 years to do something about cancer? What would you strive for and what would you do?
The answers are striking. Many answers were given. Three kinds of answers that we found keep us busy. These answers came to the fore in three different places: Berlin, New York and Toronto.
The three boys share one basic intuition, which they consider critical. When bad things happen to people, and this is obviously the case with cancer, then those who support you and often they do this as professionals, should know what they are doing. Because knowing what they are doing justifies their involvement. But what does that mean, to know what they are doing? Knowing what one is doing may mean different things to different people.
The answer you get depends on whom you talk to, or who is supporting you. We take each of their perspectives seriously. Each answer from the distinct perspective has its merits. The ultimate question is how the different merits coincide and what conclusions one may reasonably draw from a notional confrontation between the perspectives.
The answers we encountered happen to be related (incidentally, because we were there) to three remarkable cities: Berlin, New York and Toronto.
Berlin
In Berlin Jan meets Gerd Gigerenzer, who as research psychologist heads the Max Planck Institute for Human Development and is the director of the Centre for Adaptive Behaviour and Cognition. He speaks for the patient. He showed in his research that patients and their doctors very often don’t know the precise background for what they are doing. A patient may be advised or may get support for the decision to take a test that has no added value, but can add to the risk of some unwanted side effect. The patient is often not aware of this. One of the most striking examples he gives is the PSA test, which is a (poor) indicator of prostate cancer. Many men take such as test, and base their decision to take such a test on 5 years survival rates, determined in trials. Of course the younger the age group such a test is taken from (younger than in the trial), the higher the 5 years survival rate. But this does not tell you anything about mortality! Also as more people with non-progressive cancers take a PSA test, the mortality rate goes down as well. The correlation (technically speaking) between the 5 years survival rate and mortality is zero.
Doctors and patients should know and understand this. Efficient and high quality healthcare requires informed doctors as well as informed patients. But patients are often health illiterates, or behave as illiterates. In the case of cancer, loosing grip on ones immediate reality is not uncommon. But also doctors often lack for example understanding of health statistics and therefore cannot really support the patient the way they should.
What does this patient and doctor outlook mean? Really knowing what you do means that doctor and patient can make a well founded shared decision, and the choices leading to actions that produce outcomes, which benefit the patient substantially.
New York
Erik, Johan and Jan fly to New York. In New York the Science Advisory Board of Understanding Life meets for the first time. Present are Josep Baselga, Arnold Levine, Charles Sawyers, and Bob Weinberg. These men are well known for their scientific and clinical work in the area of cancer research. They are the very best. This is their first meeting. Here the first sketch of the roadmap for cancer treatment and research for the next 10 years is outlined.
Obviously, researchers want to perform good science. Good science is for the benefit of the patient. Although good science is necessary, it is not sufficient to deliver good treatments for patients. For example, many mouse models are based on good science. Very good science, and results are published in the most prestigious journals. But does this science reach and benefit the patient? It may, but often, it takes years to really act on the knowledge.
Hence the committee chooses for translational medicine, which does reach the patient. Compared to basic research translational medicine is often more messy as it is more difficult to control all variables. But the results are closer to the situation of the patient and therefore indicating better what eventually may benefit the patient.
Knowing what you do, means something different for the lab researcher, than for the translational researcher. For example, a mouse model provides much more controlled data therefore more accurate estimates of a drug effect, but its relevance for the patient is much less clear. This does not mean that we should abandon mouse models. No! But mouse models are the means, not the end.
Baselga and Sawyers are medical oncologists. Levine and Weinberg are cancer biologists. All have in common their wish to open the black box of cancer. They want to know what they do in terms of the biology of a tumor. Increasingly it becomes clear that biologically, people and mice are too different to be treated as subclasses of the same model. This brings translational medicine to the fore. In translational medicine the transfer from lab to clinic is the crucial step.
What does this outlook mean? We find it very interesting that so much can be known about the biology of one particular individual, that this knowledge is of direct relevance to a patient in question. In other words, when Baselga, Levine, Sawyers and Weinberg say they know what they study on biology, then they in effect say that the cancer biological knowledge they obtain is of direct relevance to you: your own body, your agglomeration of cells, your unique genome.
Toronto
In Toronto Pete, Erik and Jan meet Stephen Friend. He is the organiser of a meeting in which many of the big pharmaceutical companies take part. Stephen is the founder of SAGE Bionetworks. SAGE is a non-profit organisation that facilitates the sharing of medical information. The subject of this conference is the sharing of medical data among the pharmaceutical companies and Academia.
One of the things that the meeting makes clear is that Intellectual Property (IP) often hampers the development of effective therapies. Instead of driving improvement and innovation through the prospect of future gains, IP blocks the venue toward testing the effects of drug combinations. IP restricts the availability of the candidate drugs.
Big pharma is used to perform big trials. Interestingly, many pharmaceutical companies fail to turn out new and successful drugs. IP served as their insurance for company profits at the end of the line of drug development, when the drug makes it to the market. But these days, the opposite is the case. Effective and affordable drugs are often not reaching the market, or they are taken from the market. IP hinders the systematic, creative and efficient exploration of combinatorial drug therapies. In addition, because relevant data on the effects of drugs are not shared, research is biased to developing block buster therapies, not individually tailored effective drugs or combinatorial therapies. Due to the lack of efficacy of new drugs, the drug production comes to a halt. Big pharma is lost in translation.
A new outlook is needed. Big pharma must reorient itself and reinvent itself, maybe. Big pharma may have to turn into knowledge intensive medium and small-seized pharma. And it must again find a path towards knowing what it does. Saying that you know what you do when your drug is effective in just 2 out of 10 patients and you don’t know which 2 patients will benefit and which 8 will not, basically means that you are ignorant. What you do for an individual patient is relevant. Right now drugs are turning out that do not or do only marginally better than existing drugs. The good news is that based on current knowledge of the biology of cancer, the administration of therapies can be improved dramatically. Knowing what to do may often mean that a therapy does not make sense for particular individuals. Not choosing for a devastating chemotherapy, if it is known that its effect is zero, means that you can avoid useless toxicity. And this is the kind of knowledge that pharma (big, medium and small) should strive for!
Cancer out of control
The three cities stand for three steps toward getting cancer in control. Because cancer is out of control, right now. The unbearable logic of cancer leaves no room for illusions. Illusions will be shattered if we do not start doing things right.
To get cancer in control, we create a roadmap. The objective of the Roadmap is to get cancer in control in 10 years. The logic of cancer requires three steps. The three steps form three interconnected imperatives: the Network imperative (N), the Personalisation imperative (P) and the Networked Personalisation imperative (NP).
This is the overall system of imperatives that underlies our roadmap. First, we will have to face the facts. We must acknowledge what we know. Our societies face a Titanic disaster otherwise. Aging is the primary growth factor of the increasing incidence of cancer. And aging is also the growth factor of life itself. Eradicating the one implies eradicating the other. Where there is life, there is cancer. But this does NOT mean that we have to leave things as they are. We can do so much better!
1. The Network imperative (N)
The growth of the knowledge of cancer is speeding up. Take a look at the number of publications on the p53 pathway, the pathway that controls cell death. But the preclinical knowledge of this and other pathways is unevenly spread and the translation of this know how and the accessibility of high quality treatments is not equal for all. Geography is destiny. Living in the wrong place or getting hospitalised in the wrong hospital is decisive for the kind and quality of the treatment you get.
The network imperative says that cancer research centres and cancer hospitals have to function as networks that exchange knowledge, data and experience efficiently, thus effectively functioning as one knowledge organisation. We want to start this network with ‘just’ 100 such centres in at least 10 different countries in Europe and beyond. The drivers of this network are the patients. Inspire2Live will provide an up-to-date cancer Wikipedia. Each centre in the (growing) network will have to strengthen the other centres, and vice versa, in order to reach as many people as possible.
2. The Personalisation imperative (P)
Personalisation of cancer treatment means that a treatment is tailored to the specific characteristics of a tumour of a particular patient. We take the meaning of personalisation further. Only taking the biology of a tumour of an individual patient as focus of personalisation is restrictive and leaves non-biological variety out of the personalised approach. In our outlook, personalisation of cancer treatment means that a doctor and patient engage in shared decision-making, and doctor and patient are well informed by the biology of the cancer and the variability among individual patients. Not in some perverse manner, like knowing exactly that 21% of the people treated within an age group benefits from the treatment. No, refining this for a particular individual is a crucial task for the doctor. Living situation, age, physical state, et cetera should be part of the decision making and planning of a therapy. We must head toward good treatments: good as in the good life. Marginal improvement of existing therapies will hamper overall improvement of the delivery of better healthcare. The decision not to treat can be the better choice, but so far we fail to know when that is. This must change. And yes, confident doctors and confident patients are necessary. Personalisation without confidence is not a viable route.
3. The Networked Personalisation imperative (NP)
The third step is built upon the other two. N is based on knowing what we know and sharing this knowledge. P is based on treating each and every patient based on his and her particular biological, social and personal characteristics.
The third step, NP feeds P back into N. The knowledge of therapy effects is fed back to the healthcare system, which functions a one knowledge organisation. This must lead to the creation of new knowledge for the benefit of patients who have become part of this network.
It's health literacy, stupid
Let us return to the driving wheels: the people, who may become patients and the family of patients or friends of patients. N, P and NP only work, with a population of patients and their relatives and friends, doctors and hospital staff, and researchers who endorse health literacy. Because ultimately the patients and not to forget the doctors make the decisions. Patient and doctor are the final elements in the chain from lab to the clinic. What happens there is decisive for the future of the individual and for the future of cancer healthcare.
Date: 31 January, 2011
Jan Gerrit Schuurman
Note by the author: This blog belongs to the genre of impersonal autobiography. Moreover, this blog is not about one person, but about three persons. Three boys: Peter (a.k.a. Pete), Coen (a.k.a. Erik) and Jan Gerrit (a.k.a. Jan).
We do not execute what we already know!
January 11th-January 15th 2011. Those were the days. Peter Kapitein, Coen van Veenendaal and Jan Gerrit Schuurman met in front of Bob Pinedo’s house in Amsterdam in the morning of January 11th. Erik and Jan had brought their suitcases. They would be staying at Pete’s house. But before dropping off their baggage, they had this warming up session. An enthralling meeting with Bob Pinedo ensued. The Understanding Life conference would have an informal start in the evening of January 11th at The Grand, the former City Hall of Amsterdam, now a magnificent hotel.
They were excited. In June 2009 they had started this venture. Pete and Erik had contacted Harold Varmus and Paul Nurse. Anton Berns had given them an introduction. Jan Gerrit had contacted Freeman Dyson and James Watson on his own, of course helped by the promise of the contacts with Varmus and Nurse. In September 2009 they first met with Freeman Dyson at the Institute for Advanced Studies in Princeton. On Einstein Drive 1. There they also met Arnold Levine, their future chairman of the Science Steering Committee. Freeman Dyson got them into contact with Arnold Levine in the canteen of the Institute for Advanced Studies in Princeton. Freeman gave the three boys a pass. Arnold gave them a path. Then they met with Harold and Paul at the Rockefeller University. Harold and Paul gave them a mission and a goal. Their mission became to understand life, for the benefit of humanity. They shortened the mission title to Understanding Life! Their goal was to get cancer in control, with the support of the best people, the most up to date knowledge, techniques and methods. Finally they met with James Watson, at the Cold Spring Harbour Laboratories. Here we met with a scientist who spoke with the fervour of a patient who has to live with cancer. He put the pressure on the community of researchers and clinicians: “Get me results during my lifetime.”
In September 2009 the Understanding Life program was conceived. And one year later, September 2010, the Understanding Life conference was finally planned and its organisation was set into motion. Robbert Dijkgraaf (president of the KNAW, The Dutch Royal Academy), Peter Kapitein and Jan Gerrit Schuurman agreed on the framework of the program. Nout Wellink (president of the Dutch National Bank) gave his consent. A team of dedicated people met every two weeks and took care of all details and arrangements. The Dutch Royal Academy of Arts and Sciences and the Dutch National Bank had officially joined forces. Hugo van Bergen, Jolanda Pel, Marja Kooijman, Bart Veilbrief, Johan van der Waal and Tom Oosterwegel set out to make the miracle happen: to give the best cancer scientists and clinicians a stimulating environment for discussing the problem of cancer; for creating a setting in which an innovative research culture could emerge, new research and treatment traditions would become in view and the sharing of cancer and disease related information among scientists and clinicians would be accepted as a norm. Let us do science the 21st century way!
The Three boys series started as a kind of impersonal diary. In it we attempted to tell the story of our quest to better understand cancer in the light of today’s knowledge and intuitions. The boys were determined to meet the best scientists and clinicians. They also had a clear idea of what to do first. Get those scientists together and let them work on formulating a ten years program. They wanted to get cancer in control.
A new set of questions
The quest is not over. It has just started. We cannot sit still, watch the disease in action and wait for science and medicine to solve it for us. The disease affects us deeply. Clinical cancer is a killer, physically, mentally and socially.
We are deeply dissatisfied with the state of cancer. There should be more clarity about the essential aspects of cancer. About what makes the disease so hard to control. How we can remain so sloppy with regard to controlling the emergence of the disease. Epidemiology is for example unnervingly clear about some of our habits that increase the likelihood of someone developing cancer: smoking, obesity and alcohol. The knowledge makes you angry. Anger is a stimulating wake up call, but is not enough.
So our quest goes on. And while we ignite and push the Understanding Life program, we are eager to find answers to three basic questions:
1. What do we know about cancer?
2. Regarding cancer research and treatment of clinical cancer, do we know what we are doing about cancer? Do the patients know what is done to them, and how they personally benefit and benefit others?
3. Do we execute what we already know?
These questions, we think are crucial. And the answers are important for all of us. No one excluded. To get cancer in control we have to face cancer, we must know what we must do and what we can do to get cancer in control. We are obliged to execute what we already know, and we are entitled to knowing what can be done about the disease in each and every personal case. We must also look at the price tag. But never put the economy first. And we must be honest about what gains are worth pursuing. Increasing life expectancy by 3 months is not enough. But two years is a serious gain.
We are heading for a Titanic disaster
What do we know about cancer? Let us bypass the statistics for the time being, and focus on the state of cancer. The incidence of cancer is gradually increasing. Cancer beats every other disease in terms of incidence and growth over time. We must do something.
Finding a cure that solves the problem once and for all is as unlikely as ever. Why? People should be told why. This knowledge should become part of our overall health literacy. Just as an example, let us look at traffic. We confront our children, to their and our benefit, with the dark sides of traffic. We also train them from a very early age onward to survive on the streets, between cars, bikes, lorries, skaters, pedestrians. Why would we not adopt a similar attitude to cancer? We cannot live with it and we cannot live without it. But we can control it. We can do a lot better than we do right now. We must break the ice of our unwillingness to deal with the disease. We must be prepared to confront our own selves and the selves of our families and friends with its dark side. Not to create fear, but to know what we are doing with regard to cancer. To know what we are doing and to live our lives with confidence, the way we enter traffic with confidence.
The alternative is a Titanic clash, as Bob Weinberg said it.
We should treat individuals, not diseases
Do we know what we are doing about cancer? Let us again bypass statistics. The state of cancer is that we know what we do to the manifestation of the disease at the population level, but we do not know what we do to the individuals who are the carriers of the disease. In other words, we can tell that we know some medication X works in 25% of the cases of a particular type of cancer. But most often we cannot tell whether some individual with that type of cancer belongs to the lucky 25% percent or not. That is unacceptable.
We do not execute what we already know
Do we execute what we already know? David Lane, one of the researchers who helped discovering P53 said it without restraint. No! we don’t execute what we already know. And it is a scandal. But then, what do we know and how do we make this knowledge available and guarantee that individual patients know that what is known is also executed to benefit them?
The 3 Boys will be grappling with those questions, time and again. We know that the answers are not simple. But we do know that these questions are too often neglected.
So continues our quest. To get cancer in control we should at least know what it is that we are facing, know what we are doing to individual patients and know what we actually know.
Read more blogs about The Three Boys here