Health Sensemaking Software Tools
Right now, most people are doing medical sensemaking in an adhoc way. Dr. Joel Fuhrman's excellent work, or Dr. Andrew Weil's excellent work, or the Blue Zones project and related books are examples of the best one can do with an ad-hoc approach driven mostly by one very smart and motivated individual. The question is, can we do better using better software tools? The Cochrane Collaboration has one approach that is more structured, but it is not holistic and focuses on just scientific studies, which is problematical when recent news has show how financial conflicts of interest have compromised much of the health literature. It also focuses on general advice not specific to an individual or community. We need better tools that support lots of people with diverse perspectives working together in a somewhat structured way to make the most of all the information out there.
The excellent movie "Fat, Sick, and Nearly Dead" by Joe Cross is another example of one person trying to making sense of medical things on his own after getting terrible advice from most doctors, showing how much this remains a real and pressing problem. But even that leaves out details like "The Pleasure Trap" that Doug Lisle and Alan Goldhamer have written about, or stuff on vitamin D that Dr. John Cannell has written about. We need to do better. Doing better would literally free up trillions of dollars worth of funds every year currently going to medicalized sick care that could instead go into other socially responsible projects or back to individuals through lowered taxes.
For example, consider the question of how much salt of what type is good for a specific person (you) to eat every day? How easy is it to begin to research that for yourself? How long would it take, even with a web browser and search engine at your finger tips? How would you know which study to trust and how much -- including based on who funded them or how carefully the work was done? How could the online community help organize all that information for you? If it was organized, how would any general advice you found about salt consumption apply to your own specific situtation and lifestyle and family history? Would the amount of salt you needed matter based on how much you exercised, or where you lived, or whether you went outdoors a lot, or whether you ate a lot of fruits and vegetables? How would you answer the question of whether there other health factors in play that may make some people sensitive to salt, and perhaps if you improve those, maybe salt intake won't matter much? How have opinions about that changed over time? If you try changing how much salt you eat, how should you interpret any changes in how you feel?
There may well be "experts" out there who know good answers for these questions specifically about salt, but they probably are not you personally. Statistically there might be a small number of experts out of billions of people, so most people thinking about how much salt to eat are not goingto be experts. So, almost everyone is left wondering which experts to trust? Even if all the experts agree, they could still be wrong, or their general advice might be easy to misinterpret for your particular situation. And if you specifically by chance are an expert on salt intake, then you probably are not an expert on phytonutrient intake or cancer treatments, and so you would be faced with this same issue in some other area of personal health. So, there can be a gap between what an expert (or community of experts) know, and what an individual or local community knows and then acts on. Part of the value of better software tools, including educational aspects, may be to help bridge that gap between expert knowledge and individual practice.
This recently temporarily "withdrawn" article on " Reduced dietary salt for the prevention of cardiovascular disease" due to "doubts raised about the integrity of research" is an a example of how dynamic the medical publication landscape can be. Withdrawal of one article does not mean other similar articles are not valid though, or that a general concept is not valid. The research landscape can seem very dynamic and conflicted, even if there may often eventually emerge broad agreement on some truths. Could better tools help even subject matter experts track all these changes? So, whether you are an expert in a field or just an individual with a health issue, there is a challenge to make sense of this all for yourself at any point in time (even if the challenges may differ somewhat for expert and patient). It is also hard to draw conclusions from small numbers of studies in a mass of large numbers of publications on complex topics (something somewhat analagous to "weak signal detection" in the intelligence community). Yet, ultimately, each of us still personally needs to decide how much salt to eat each day (or broccoli or sugar or barley), so we can't avoid the issue (even if we can ignore the issue or any new information and just keep on eating as we have in the past).
Ideally, one might imagine authoritative sources on every aspect of health (including salt consumption) which supply the best health advice for every locality specific to every person. For example, imagine the archetypical old-fashioned-but-up-to-date grizzled "country doctor" who knows entire familes in a community from birth for multiple generations in a personal way and provides the best specific health advice for the area and the individual. That might range perhaps from "Salt killed your grandpap!" to "Ain't too much to worry about salt since you exercise so much working outside in the Arizona sunshine." But such a health practicioner and community is mostly just a fantasy. There may be such health practicioners and stable communities out there, but they would seem at best few and far between these days in today's highly mobile society.
Compared to the ideal mentioned above, in practice a typical real-life health interaction for all too many people is more likely to be ten minutes spent with a new physician (perhaps due to insurance plan coverage changes) who recently moved to the area, has big worries about repaying 200K in newly-minted student loans, and has limited experience with a specific health complaint and the individual's life history (including what is not said). In regards to an issue like advice on salt consumption, even if the physician knows that in theory someone who exercises outdoors a lot probably needs to take in more salt, is there going to be time to get around to discussing that level of detail about lifestyle with the patient or how it might relate to some health issue? Would there be time to explore and address a digestive complaint perhaps unknowingly from weak stomach acid from low salt levels? It may well be that many people eat too much salt, but perhaps this specific person perhaps eats too little for his or her situation?
In practice, there are a variety of sources of health information we encounter each with various conflicts of interest and with limitations in focus, experience, time, and continuity. A person with a health issue is confronted by all that complexity, even if they may choose to delegate the authority for all their health decisions to some chosen medical practicioner. Ultimately, we can delegate "authority", but not "responsibility"; in that sense a competent adult remains responsible for his or her health regardless of who has been asked for advice or who we let perform procedures on us.
Even just choosing what local health practicioners to rely on can be a difficult challenge, especially for someone new to an area. There are multiple on-line sources of information about doctors, hospitals, and other facilities, but how could better tools help people wade through all that? In the internet age, we also can decide whether to look beyond local doctors to search nationally or globally for medical advice -- especially with emerging telemedicine technologies. But that huge number of distant options may just make decisions even harder. And yet, bouncing from one doctor to another also often prevents a specific doctor from iteratively working with a patient through trial-and-error and slowly learning more about a specific individual; so that is another factor to consider when thinking about changing doctors. So, even if you were to accept uncritically everything your doctor says, finding that one doctor can itself be a big challenge.
The general admonition to "get a second opinion" for major health interventions indicates it is not uncommon for patients to receive conflicting advice from different medical practicioners (as well as from well-meaning friends and family). But what do you do with two expert opinions? Or three? Or more? Ultimately, individuals need to make health choices as they take responsibility for their own health, even under a doctor's care. Sometimes this needs to be done very quickly when confronted with hard choices about life-altering interventions.
How can people "connect the dots" between this sometimes conflicting information they may learn about a health issue from various sources with specific actions they choose to do in their own lives in specific homes and communities? We want to leverage ideas already pioneered at great public expense by the intelligence community (and other groups) in order to create free and open source software and datasets for public intelligence about public health. This is a way of turning informational "swords" into informational "ploughshares".
Eventually, that could include software tools for narrowing that general health information for specific individuals in specific situations. These tools could help individuals and communities make sense of all this often confusing and conflicting information about health care needs and options, to choose what health investments to make (whether public parks, walking trails, farmers markets, or whatever). At first such software tools may be mostly used by subject matter experts, by public health advocates, and by some individuals with health concerns who have an above-average interest in medical issues and technololgy. Hopefully over time such tools could expand their user-friendlieness to be useful to more and more people, especially as more and more content was available encoded in common standards supported by the tools. Even if we perhaps can't reach a goal of tools useable by all (it is a difficult challenge with so many different degrees of computer literacy out there), at least we can help ratchet up the general abilities of a community somewhat by helping some fraction become better able to make health choices or give related advice. Such people could then help their friends and family navigate the health care maze, including by using such tools together with them. Family physicians could use such tools to help give more effective medical advice. Political analysts could use such tools to be better advocates for public health initiatives. Health coaches could use such tools to help clients better act on the advice of their family doctors.
Here are some health ideas I've collected along the way through years of personal reading and participating in online discussions, driven by trying to understand and help with my own family's health issues. Those have an emphasis mainly about the relation of nutrition and health. Many aspects like humor play a role in health, too. But I know those could benefit greatly by more discussion and analysis done in a structured way.
I first proposed this idea of health sensemaking tools in December 2010 here. I then further refined it in August 2011 here and here.
Technically, the project would be developed as open source software using tools like GitHub and Eclipse, probably with some cross-platform desktop components written in Java and similar languages. Some of the web side of this could also be created as modules for something like Drupal or MediaWiki in PHP or for other backends in other languages. The techical design would connect with emerging "sematic web" and "semantic desktop" ideas by organizing information when possible in small semi-independent chunks that could be connected together using common concepts defined in public and private ontologies.
Conceptually, there are at least two major user experience aspects to such software. The first relates to collecting and organizing real-life experiential stories and the second to structured arguments about the interpretation of collected data on an issue, whether the data is from personal anecdotes, second-hand web sources, or from scientific studies.
For health stories, we would build on my wife's ( Cynthia Kurtz's) open source Rakontu platform. She developed that after we towards tools intended to help decision makers to look at issues from multiple points of view. Some previous systems we contributed core parts to an the Cognitive Edge Sensemaker Suite and Singapore's RAHS (Risk Assessment and Horizon Scanning system). Sadly those remain proprietary, even though primarily funded with taxpayer dollars. Sensemaker has been used to help improve health products already.
The idea with Rakontu is that people tell stories about their real experiences, and answer some questions about the stories and themselves. Out of that and other interactions with the system, participants can then use tools to analyze the stories looking for trends or commonalities. In the health care situation, say people put in stories about their experiences with trying to change their diet in relation to diabetes. One could look at those stories for common trends among people who were successful or unsuccessful in making a change, and from that either come up with best practices for everyone or perhaps at least a set of approaches that different people could try based on their own life situation. That kind of discussion happens right now on the internet, but this system could make this information more structured and searchable and systematizable. Rakontu has a first version out, but my wife and I have been working towards an improved version. She also has a free book about the techniques called " Working with Stories", which she sees as the story work communities equivalent of " Where There is No Doctor" given how few communities have people actively trying to make sense of a communities stories outside of commercial efforts generally aimed at marketing some product.
For structured arguments and concept maps and similar things, we would build on open source IBIS-like technology such as in Compendium, Cohere, and Bloomer. You can see an example of an IBIS diagram, and some other background links on collective sensamking, at this web page I created here.
A key link from there on how humans are adapted to find the truth collectively through arguing. Like Patch Adams, Blue Zones, Andrew Weil, and others talk about, health emerges holistically out of a community. So all sorts of issues may come up and need to be discussed or connected to real experiences. The Institute For 21st Century Agoras has some related ideas on exploring such "wicked" interwoven issues at the societal level. But we also need tools that focus on "wicked" health issues at the individual level.
Covering a lot of ground implies some sort of filtering or sorting process available within the system as one tries to focus on specific issues. I have my own ideas for managing a complexity of topics using "semantic" ideas, such as I've worked towards in my free and open source Pointrel and Twirlip projects here, here, and here. The picture above was made using software at the third link there. We would do a current literature review to draw upon the best of what is out there rigt now.
In order to support a decentralized system for private sensemaking as well as public participation, I've been exploring ideas related to a " Social Semantic Desktop" where one would have a local copy of data and then decide to share only part of that.
It might also be possible to connect some of this health sensemaking to free and open source software about games that might attract donations, at least if offered by a group like Patch Adams' Gesundheit Institute. " Spent" is an example of such a game which includes health care choices. If you've invested a lot of time creating concept maps and structured arguments and story collections about some health issue, it might even be possible to relatively easily transform that colllected knowledge-base into some sort of simple game at the click of a mouse. Our free StoryHarp software already creates a game from a set of rules. But, first we need tools to collect and structure that information in way that makes is usable.
We are looking to raise about $300K so my wife and I can devote most of our time and attentian to this health sensemaking project for the next two to three years; we plan to release all the software and initial content as free and open source. We would need more resources to go forward with this long-term after that, so we would eventually need to line up other grants or partnerships to keep going with this after that. If the project succeeds, we would hope it easy to continue it in partnership with other health-related groups or through donations as its own non-profit. Because the work is free and open source, the world can continue to build on the results whether we can continue the work ourselves or not.
Such a health sensemaking system has the potential to save literally a trillion dollars or more a year in US health care costs. So, there should in theory be money for it. But of course, maybe that is part of the problem? :-) There are lots of profits to be made in endless treatment and palliation, but little profits in prevention and cure. So investments in this sort of work need to come from organizations that are looking at the big public health picture, so that is mainly governments, foundations, and/or individuals whose family is affected by some health issue. Such tools could help us make the most of all the ongoing interesting research out there, and could help professional researchers do an even better job figuring out new things about public health.
As Dr. Joel Fuhrman says for one example: "Trying to figure out how to pay for ineffective and expensive medicine by politicians will never be a real solution. People need to know they do not have to have heart disease to begin with, and if they get it, aggressive nutrition is the most life-saving intervention. And it is free."
And prevention also entails confronting some serious political issue too, like this: "The Physicians Committee for Responsible Medicine has posted an easy-to-understand visual on its site that shows which foods U.S. tax dollars go to support under the nation's farm bill. It's titled "Why Does a Salad Cost More Than a Big Mac?" and depicts two pyramids—subsidized foods and the old recommended food pyramid. It's interesting to note that the two are almost inversely proportional to each other."
So, in theory there should be lots of money for thousands of people like my wife and me to work on broad systems like these, hopefully bringing all this knowledge together, if only just from the health care savings to Medicare and Medicaid. Even such a simple thing as improving levels of vitamin D supplementation could potentially save $4.4 trillion dollars over a decade. But in practice, it is seems hard to get resources for other than very narrow things with a clear commercial potential in an existing area, like yet another "me too" drug variant of some existing medicine for affluent people.
The USA also spends literally about $70 billion a year or so on "intelligence". Other countries like Singapore innovate as well like with RAHS. I'm not sure what fraction of that is spent on tools but it must be significant (on the order of a hundreds of millions of dollars a year at least?). So again, there is a lot of tax money going into things that in theory could be dual-use. I suggested that here. At the very least, we can leverage the published ideas from that research community. For example, SRI's SEAS and Angler systems funded by that sort of work could in theory help a lot with this kind of work, but they are unfortunately proprietary even though paid for by public tax dollars or non-profit directed tax-deductible contributions. Still, SRI has published information on these systems, so we can study what is published and work from there as well. Also, my wife participated in the design discussions related to Angler, which has some aspects that overlap with her Rakontu software.
Frankly, I know this is a bit of handwaving. Some of these issues will only get resolved when one gets deeply into really making something work. This is a big project and ultimately could entail hundreds of developers (or more) and millions of participants, on a scale that goes beyond Wikipedia. Right now bits and pieces of it are happening, including like with the "Review Manager" and the Cochrane Collaboration, who I've talked with about this. But no one to my knowledge has made a concerted effort with modern tools and techniques to pull everything together. It can seem pretty overwhelming at first. Having done parts of it before, we have confidence we can at least get the snowball rolling.
Our whole grant funding system and an analytical academia that feeds on that seems set up to focus on specific diseases, not developing broad synthetic interdisciplinary tools like I'm talking about. And that is why it helps to know there are other groups, like the intelligence community, that have been working on these sorts of issues for decades and have developed some useful approaches (all the way back to Doug Engelbart's early work, which is very inspiring).
Here are some quotes about how the mainstream academic medical system has failed us, suggesting we need to go a step further to have the best health care.
From an article about a sociologist and anthropologist who studies science and technology, Bruno Latour: "In the laboratory, Latour and Woolgar observed that a typical experiment produces only inconclusive data that is attributed to failure of the apparatus or experimental method, and that a large part of scientific training involves learning how to make the subjective decision of what data to keep and what data to throw out. To an untrained outsider, Latour and Woolgar argued the entire process resembles not an unbiased search for truth and accuracy but a mechanism for ignoring data that contradicts scientific orthodoxy."
From David Goodstein, who was Vice Provost of Caltech: "Peer review is usually quite a good way to identify valid science. Of course, a referee will occasionally fail to appreciate a truly visionary or revolutionary idea, but by and large, peer review works pretty well so long as scientific validity is the only issue at stake. However, it is not at all suited to arbitrate an intense competition for research funds or for editorial space in prestigious journals. There are many reasons for this, not the least being the fact that the referees have an obvious conflict of interest, since they are themselves competitors for the same resources. This point seems to be another one of those relativistic anomalies, obvious to any outside observer, but invisible to those of us who are falling into the black hole. It would take impossibly high ethical standards for referees to avoid taking advantage of their privileged anonymity to advance their own interests, but as time goes on, more and more referees have their ethical standards eroded as a consequence of having themselves been victimized by unfair reviews when they were authors. Peer review is thus one among many examples of practices that were well suited to the time of exponential expansion, but will become increasingly dysfunctional in the difficult future we face. "
About a book by Jeff Schmidt, a previous editor of Physics Today magazine: "In this riveting book about the world of professional work, Jeff Schmidt demonstrates that the workplace is a battleground for the very identity of the individual, as is graduate school, where professionals are trained. He shows that professional work is inherently political, and that professionals are hired to subordinate their own vision and maintain strict "ideological discipline"."
From Marcia Angell: "The problems I've discussed are not limited to psychiatry, although they reach their most florid form there. Similar conflicts of interest and biases exist in virtually every field of medicine, particularly those that rely heavily on drugs or devices. It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine."
From the Atlantic from a few years ago in an article called " The Kept University": "Commercially sponsored research is putting at risk the paramount value of higher education -- disinterested inquiry. Even more alarming, the authors argue, universities themselves are behaving more and more like for-profit companies..."
Also from the Atlantic more recently called " Lies, Damned Lies, and Medical Science": "Much of what medical researchers conclude in their studies is misleading, exaggerated, or flat-out wrong. So why are doctors -- to a striking extent -- still drawing upon misinformation in their everyday practice? Dr. John Ioannidis has spent his career challenging his peers by exposing their bad science."
Taken together, that describes a health landscape that is a real mess for an individual to navigate, whether for a parent with a sick child, or a post-doc working on the next magic bullet, Better tools for collective sensemaking about health issues could help all of us move beyond some of those conflicts and confusions. The investment is realtively cheap, even though there are risks with every project (including software projects). The payoff of harnesing our global health wisdom via the internet is potentially huge, making it worth the risk.