New Cancer Treatments Lie Hidden Under Mountains of Paperwork

This is why I keep paper copies of all my med (w)rec(k)s and will try to continue to do so. The electronic wrecks are almost useless, as buried in minutia I KNOW was not done, examined, had to be checked off. Also the staggering amount of misinformation, on me, which cannot fix--tg been tri-coastal and none of the systems sync.

Dietary manipulation is critical in fighting Any dis-ease. Along with exercise and a healthy lifestyle, an Alkaline diet, No Sugar, white flour, or cow-dairy are essential.

Exactly what the TV industry went through... The incumbents stiff-armed and stifled one approach after another by the best of innovators in the PC - and later, smartphone - industry... Then - YouTube happened... Sort of like Amazon growing under the covers - while all the brick-and-mortar retailers denied and decried the Internet... Imagine if - when building the interstate highway system - this nation had focused more on building tollbooths and collecting tolls than building high-speed highways and bridges... That's where a good part of the industry's head is presently at - resulting pileups and carnage are unconscionable... And please don't yammer about HIPAA - an analogy... Whether I send a Word document to no one - or to ten million people - the data-level portability is there in the foundation... Fix the standardization, and security/privacy/ anonymity/study statute and regulation can straightforwardly follow... The irony - the two pieces of data that could be had for everyone for less than $1K each in volume... > Whole genome sequencing (with whatever errors/quirks from the specific sequencing technology) > Full-body MRI by 3-tesla machine ...would dwarf in volume and nuance any other sort of health care data needing to be archived The tail is wagging the dog... Also, exactly what the IT networking industry went through... A hundred different protocols - each better than the other... Then - the Internet happened...

THIS is the Manhattan project, for Cancer Research and Cures. Step up, get the funding. This is a perfect place for retired Nurses to excel, it just needs planning, and funding. Are you listening, Dems ?????

Thank you all for sharing!

This doesn't surprise me. America didn't decide to use one program when they instituted electronic health records (that would not go along with capitalism), Nor did we decide to have consistent documentation from physicians and other healthcare providers, We didn't decide to track what mattered (what treatments worked and what didn't - Medications, therapies, etc). America decided to come up with codes for each procedure and each diagnoses code for payment purposes (icd-10-cm, icd-10-pcs, hccpcs (sp?) and CPT codes). There are organizations who make a fortune from each of the coding types via publications, rules, training seminars, college classes, etc - the list does go on. We decided that medical care is a for-profit business and there are so many entities that are profiting. They know that patients are losing but hey if a buck can be made who cares? Until we decide to go with universal healthcare these details will remain obscure. Americans choose to believe that other countries don't receive excellent healthcare (even though a quick internet search can prove that we are not only behind the curve but behind tiny countries with universal healthcare). Americans choose to believe the cost will be out of reach (they don't seem to understand that their health insurance premiums are already out of reach) I know my taxes wouldn't go up by the amount I pay for insurance, deductible, out of pocket. We need others think and do the math.

In writing this piece, you have spoken with a group of non-clinicians and have missed key points in our medical record debacle. You wrote: "hospitals have no incentive to make it easy to transfer records from one place to another." In fact hospitals (and health systems) did not create this situation and have little power to change it. The companies that make EMR software see the EMR as just another piece of enterprise software. Enterprise software companies make their living by locking in clients to their proprietary systems and making it ruinously expensive and complex to change to another software. This ensures their ongoing profits. The lack of portability in medical records is a by product of this reality. You state that the government set standards but they set no standard for data formatting and portability, which was a colossal blunder. Now we have invested hundreds of billions in software that is entirely proprietary and which, by design, makes direct information interchange impossible in many circumstances. I find it disappointing that your article has missed the key issues in EMRs, whose deficiencies extend far beyond the area you discuss.

If only patients’ medical records were created, stored and transmitted with the same state of the art computer technology that the medical industry’s billing departments use. Hard to imagine their accounts receivable and insurance verification and collections departments relying solely on faxes.

Apparent in the article's theme, the only hidden cures that are of interest are pharmaceutical drugs. Any other substances, that is, anything other than pharma drugs, are not of any interest, even though there are instances in the medical literature which indicate that some non-drug substances have been found to be effective cancer fighters. Domination by the drug industry of all health-related issues is a clear manifestation of the retrogressive nature of modern-day health science.

What a feeble bunch! There are literally a million people in North America who can read a faxed medical record and extract the relevant information. To suggest that this is the bottleneck in such a study suggests that the investigators need to be more adventurous in getting help. Even taking a cohort of medical students and using this as a teaching adventure would get the job done. To suggest that abstracting a medical record is harder than interpreting next generation sequencing of a tumor suggests to me that we have our value system seriously inverted!

Cancer has become big business, and the cure will never be found, and if found it will be shelved for the sake of money. That's my belief.

I've worked in an adjacent field and there are not nearly enough resources devoted to the translation of unstructured or under-structured data into a universal usable format. I spent years asking for an effort to standardize similar data. Now I sit through meetings where the participants talk about plans to discuss a universal format that will one day be implemented by individuals with their own set of biases and priorities. On top of that, this is always seen as a tertiary responsibility by the folks that know the most about the subject matter. Its a under-resourced and under-prioritized...meaning it never gets done. Just endless discussion. If these kinds of projects focused on setting the agreed data template and methodology, and just getting that done, a labor force of data grunts could be applied to translate the data. This inability to simply scope the need and make a plan seems to be a universal problem.

It is maddening to think that we can come so far in researching cures but we can’t find the money to fund a records system that brings potential cures to patients?? Come on Zuckerberg and friends. Bring your innovation and money to this project and make a real difference. There are minds out there to solve this problem; now we need the will.

There are many well researched treatments for cancer that are available to any and all who are interested and are willing to look outside the narrow confines of conventional medicine. Oncologists have little training or awareness of these many well researched treatments and the press shows little if any interest in them (I hope they are willing to give the lie to this accusation by publishing this comment). These treatments are largely provided by Integrative Medical doctors or Naturopathic doctors and consist of a variety of very thoroughly researched alternative medical interventions. There are dozens of books on the popular marketplace about these and dozens of practitioners who can easily be accessed through the web. One needn't be all that talented at surfing the web to find a cornucopia of cancer treatment options and practitioners who offer these services. I can't endorse all of them, but many of them are scientifically verified. Not all these practitioners are necessarily trustworthy, but some are. None of these treatments are approved by the FDA, in spite of their having broad scientific support. We all can guess why this is. It is up to every individual to decide whether to trust the FDA and wait for the paperwork pile to be dispersed or to allow our native curiosity to go where the straight and narrow perspectives would rather that we not look.

The American Society for Clinical Oncology created CancerLinq. Oncologists from all over the world are submitting data from various EHR formats and ASCO is translating to a common database. All on ologist members can create reports for specific paging types. I was surprised that there was no mention of CancerLinq.

I live in the Boston metro area. I have recently been treated for endometrial cancer at Brigham & Women's Hospital and Dana-Farber Cancer Institute. I was notified by both hospitals about two research databases that are gathering participants: Partners Healthcare Biobank biobank.partners.org "All Of Us" research database of the NIH allofus.nih.gov I gave blood, urine and DNA samples at the hospital and signed the permission form to access my medical records. All patient records are treated anonymously. There's no further involvement from me. If there is anything that my medical history, cancer and treatment can do to contribute to research, count me in! They need everybody to participate; any medical history, any age, any illnesses, and healthy people, too. The more information they can get from as many Americans as possible, the more effective the databases will be for medical research. Let the software engineers figure out problems with the records, it'll happen. Let's do this!

Exciting, now if only the nurse could hit the vein in my hand for my infusion. Funny how even the grandest schemes can fall apart because of one broken thread.

Another reason to scrap the current EMRs. They aren't user friendly, don't work and play well with each other, and actually discourage good record keeping. And your project is one more reason we need universal medical coverage instead of the patchwork we've been forced to deal with. Doctors, hospitals, outpatient clinics and medical personnel across the country should be using standardized forms to report on patients and their treatments, their responses, the side effects, etc. Until we can do that all the technological advances mean nothing. And our records should be freely available to us as well. Our lives do depend upon it. Until we know that our records are an accurate reflection of the treatments we've received, our allergies, our responses to treatments, what injuries we've had, those same records ought to be viewed with huge caution signs pasted on them. It's a disgrace that our country with all its emphasis on technology has done such a poor job with medical records especially because those records can help others besides us.

Another serious problem in obtaining and correlating medical records for this vital research is just hinted at here: even a specific request made in person by the patient may not yield his or her's medical records. Requests get overlooked, staff in the medical records department have other priorities - God knows what. I myself ( a mere Ph.D in statistics , not an M.D.) attempted to pull one set of records for a 16 week long rehabilitation programme from one prominent New York Hospital with two personal visits to the Medical records department. Despite seeing my requests duly inscribed, no records ever emerged. Fortunately I had contacts within the Hospitals administrative staff who eventually - some 3-4 months later - managed to extract my records. Heaven help those - even dedicated researchers - who attempt to obtain Medical records without the time and personal contacts I had to obtain my own records.

My spouse and I have signed the paperwork to donate our bodies to a medical school. Having participated in a long range study some years ago, we believe that the best way to advance research is to provide medical doctors to do some hands on research now when it can do good.

This is what I thought Watson, the supercomputer would do. After seeing the episode on 60 Minutes where the doctor from Sloane Kettering was interviewed, he mentioned that at first he was skeptical, but was on board after experiencing Watson's usefulness. I have no interest in drumming up business for IBM, but the episode mentioned that there are 8,000 research papers written on cancer daily and that Watson was capable of reading millions a week. I was enthusiastic as crazy after hearing it and the possibilities seem incredible. A doctor submits a query to Watson with details of a particular case. Watson sends back its analysis, with more than one recommendation along its statistical coefficient for success. This to me is the Golden Goose, I just can't understand how its not at the fingertips of every Doctor on the planet. If you're the person suffering from cancer you deserve Watson's cutting edge database -- anything less just seems neglectful, I know I'd expect it.

There have got to be enough retired medical professionals who would love to help with this if it can be properly crowd-sourced. Or why not a pre-med course requirement to help. Great practice. Historians have long known the problem in many cases is/will be too much information.

My sister had stage 4 Renal Cancer and she went to the City Of Hope Cancer Research Center. She went they 2 clinical trials to shrink her tumor although they took out a kidney and kidney tube she lost her life. During her fight to live I was going thru Stage 3 breast cancer and a breast removed. Now again they found a fast growing tumor on the other breast which I will have this breast removed soon. My sister was my teacher in helping me find and try different breast medications and procedures luckily the records were available for both oncologists to compare and try various remedies and the outcome after we took them to shrink tumors. We were happy to find oncologists who wanted to try treatments “outside the box” they wrote down how we responded to the various treatments and we read up on these medicines that we were going to try. When you are so sick you don’t have the energy to read or research other patients records to find out information that may help you so I was lucky to have access to my sisters treatments and response from the several medications. I pray everyday for one more day I appreciate all her guidance,encouragement patience, and love she returned to me while we were both under such severe procedures just to have “one more day” when we savor ever second when we were feeling somewhat better and not deathly sick from radiation, chemo, or surgeries. So all you cancer patients don’t give up you are always in my prayers you are gods brave angels.

There are seemingly endless challenges with this kind of research. For example, medical care does not require the same kind of information as medical research, so it is often very difficult to query medical records in a way that researchers can use. Science requires control over variables to a far greater extent than direct medical care, so even a digital record can't tell you quickly that, for example, a patient has been on a stable dose of Lisinopril (no greater than 20mg per day) for 18 months before randomization. A researcher needs to find many patients that meet those sorts of criteria (and many more) as efficiently as possible. A doctor only needs to know that the dose the patient is on is working and not causing side effects. Doctors and other providers are already at the limit of their ability to record information for many purposes other than patient care. I don't know what the solution is, but adding more information gathering to the patient's visit will be difficult, to say the least.

One of the best arguments for single payer nationalized medicine where all medical records are in a single database. You'll find out quickly what treatment works and which has dangerous side effects.

Medicine has devolved to neat checklists that do nothing. Doctors spend the whole appointment clicking boxes. "Do you have nausea?" click "Do you have vomiting?" click "Do you feel safe at home?" click "Do you get exercise?" click "Do you want to quit smoking?" click "Why don't you want to quit smoking?" All these data collected, most with no actual basis in patient health besides some administrator's great idea. Now another company wants to replace even more of a patient's appointment with even more checklists? There are no good ways to send data from one brand of EHR (such as Epic) to another brand of EHR (such as AllScripts). This is by design. The manufacturers know they have doctors over a barrel and there is no regulation. It can cost thousands of dollars PER PATIENT to send data from one to the other. Is that what you want your money spent on? The cheapest, most secure way to send patient information from provider to provider is still fax. Email is insecure. Online clearinghouses are insecure. Text messages are insecure. Blame hospitals for being too cheap with their IT security.

This is worthless. We've poured billions into cancer research, and the death rates of cancer haven't budged. What we need is a cure, not a treatment.

There are several layers of fixing this problem. The key one is to build a collaboration portal where patients willingly share data in return/hope for related information from peer patients, and auto-flagging of known variations on shared data (pretty much 23andme type matching- not medically perfect, but some additional points of view) Researchers on the other hand will get access to structured data, up to date data. On the fax front, unstructured data sets can now be digested as it was pointed out. The days of spreadsheets are gone, we actually do not need to transform our data into columns so that we can query them. We may even apply self learning algos to figure out what data means or if they are related (artificial intelligence) in addition to mass crunching on unstructured data sets. Will it be perfect? No; Will it be better than not processing those data sets? Yes.

It's a thin line between designer treatments and designer bodies. It is a bit dehumanizing to have our selves be managed so tightly by a bewildering array of technology. I guess I am unusual in that I don't mind having a fallible body. It is part of what makes me human.

The same way the oncology community has established Standards of Care perhaps it is time, even on a voluntary basis for now, to more thoroughly standard charting to make data mining more accessible. Th more targeted targeted therapy gets the better! Going forward, asking patients for their participation in obtaining and passing along medical records will speed up the process.

You need the patients to compile the record! May not be a representative sample of patients but they should have all the information. And they can help decide what’s important data in terms of functional capacity / response etc. Admittedly the guidance notes about interpretation of pathology reports on biopsies will need a lot of detail and it might be difficult, but I’m sure you’d get thousands of people entering their own data from around the world. And the data should be owned by the patient, and any research that generates a commercial profit should pay a royalty to the registry database to keep it running and any excess to fund patient charities! Win, win, win.

put out the call on reddit and wait for the cool intelligent and sometimes fantastically talented people there to offer to help out.

This type of "data mining" has been around for a long time in many fields. It is what I call the Grand Illusion, a kind of mirage created by combining unlimited computing power, IA algorithms and infinite storage. In theory, it is very exciting and full of promise. But in practice, it is mostly based on the fantasy that anything occurring in the real world can be quantified and/or cataloged in finite categories. There is one very telling line in this article: "That note became a narrative. It is not something that can easily be put into a spreadsheet." You know what? Maybe that narrative form has its importance. When you try to break it down (with techniques known as "content analysis"), the process itself eliminates a rich layer of meaning. Add to that the subjectivity introduced by the interpretations that will be made during the transfer of all the other individual bits of data trapped in these records to a structured format. In the end, you do get normalized data that can be easily crunched, sliced and diced in no time by a gazillion CPUs, but do you really get quality answers? I sure hope so, but I still doubt it.

A good article. As one ages, I determined we often get in the vortex of seeing numerous Doctors. They usually don't communicate among each other, with your records. Doctors seem to want their own set of records about you, and with what software they use to record whatever. Enter numerous duplicated test. My approach after having been diagnosed with MDS., at a fine Hospital with a renown Oncologist/Hematologist treating me, was to attempt to get my other two Doctor disciplines under the same roof . A Urologist, and a GP. Both my current Urologist and GP won't accept data via the internet from the Oncologist or the blood work lab. I have to print it off the Hospital My Card software and either mail or fax it to the other two doctors.

The idea of pooling data, which could be de-identified in order to comply with HIPAA regulations, is a good one. My fear is that the burden of entering this data into some kind of mega electronic record will fall on the docs and other providers increasing the click burden already wearing us down (See Verghese's piece in the Sunday Times Magazine).

Surprised by medical offices using faxes. Really? Try being a patient and to get all your records into a central place - even your PCP never has all your records. Try to get one doctor to send test results to another doctor. Try to keep a chronology of all your tests and procedures and where they were done. Change doctors and a trail goes cold. It is an impossible systems for patients. This mess has an immediate impact on getting a proper diagnosis and treatment for any condition that you are suffering from. The medical records system needs to be fixed for doctors, researchers - but most importantly for patients.

In the present system, there is very little incentive for cancer care providers to spend more time and money on documentation than what is required to justify billing. So, until every patient is enrolled in a clinical trial and insurers refuse to pay for cancer therapy until the critical information is uploaded and accepted as complete by a national database, etc., this problem will be with us.

“They give Ms. McGillicuddy and her colleagues permission to request their records. Ms. McGillicuddy faxes requests for records to each medical institution that treated a patient, or diagnosed or sequenced her cancer. Startlingly, faxing “is the standard,” Ms. McGillicuddy said, for medical records requests.” We’ve put men on the moon and hackers are able to manipulate and expose security firewalls to garner confidential information about millions of individuals regarding their banking records, credit histories, medical records, voting irregularities, just to name a few, in only a few years’ time. And yet, the medical profession is still clinging onto and depending on the fax machine as their primary source of receiving and sending classified medical information. I applaud Dr. Nikhil Wagle and his “brilliant idea to advance research and patient care.” I think his intentions are incredible and noteworthy. But Dr. Wagle, please, back out of the 1970s and venture into the new millennium’s state of the art technology. There simply has to be more efficient and higher tech methods of garnering medical intel than the lowly fax machine. There also is the issue of inaccurate or incorrect medical documentation on a patient’s medical records. On more than one occasion, I have requested my doctor’s office to correct the errors listed in my history . . . still waiting for those corrections. Is that issue on anyone's rador? Thanks Dr. Wagle for attempting this arduous task.

I am glad there was a correction regarding Dr. Abernathy's role at Flatiron, but Ms. Kolata has missed the forest by looking at two trees. First, there have been and continue to be many researchers in many medical fields, including oncology that have amassed millions of EMRs and other data linked with all sorts of information (Foundation Bio specializes in linking genomic information, but that is not the only information needed- see OSCER - managed by Amgen, CancerLinQ by ASCO, Vector Oncology, IQUIVA has many, as does Optum. Second, the real debate is who owns this information - is it the providers who spend much to generate and maintain it, or is is the patient who is it about, or is it all of us, as a public good for public health? There would not be a thriving market (with data brokers of all things) in patient medical data if health care providers and health IT companies did not do so much work to generate it. How do we reimburse them for the work that they do?

This article offers hope on several levels. First, it offers hope that once anonymous patient data is available in a single uniform format, a lot of important and potentially lifesaving insights can be gained. Secondly, is offers a glimmer of hope that it is still not too late to architect patient data correctly and have the patient (not doctors or hospitals) own and control their own medical information.

This is such an important problem to fix. While all these health startups are attending conferences and participating in "disruptor" panels, counting their followers, healthcare communication is circling the drain. Health records are a disaster. Faxes? Seriously? Why not create one platform that everyone MUST use. This way everyone will be talking the same language. If there is any advantage for a monopoly, this is it (a la Google, FaceBook). Come on folks, pick a lane. Stop talking about it already. Build it and watch how easy it will be to find the right treatment for the right patients at the right time.

Could we just pick a date to outlaw faxing medical records and communications and make it tantamount to malpractice? It's not just a cute anachronism it's killing people.

Crowdsourcing could help help tackle the mountain of data breaking it down so that simpler, more repetitive data entry could be handled by less trained volunteers and then forwarded to experts for the more technical data to be interpreted and entered. There are also combinations of AI and information management software that can further reduce manual intervention. Today's computer science students are great out of the box thinkers and would be great for helping tackle this need.

The medical records mess deserves a solution for a variety of excellent reasons, including cancer research. If the Federal government can't or won't mandate a solution, then maybe the major hospital chains should join forces to settle one one standard. Meanwhile, the article says, "The data exist in all sorts of formats, and crucial information may be missing altogether." The important data that is usually "missing altogether" is the data focused on the diet and lifestyle of the patient prior to the onset of disease. These details, if provided, would confirm what other research is showing -- that diet and lifestyle are far more powerful predictors of disease than any genetic links. People need to be eating their fruits and vegetables, avoiding animal products, and exercising daily.

So Flatiron "obtained" 2.2 million records from medical centers. How? If there are contractual agreements involving the exchange of money for these records, or the use of these records, the law under HIPAA may have been violated. Flatiron is not conducting the research. It is looking at the records one by one and codifying them. They may not have patients' authorization to use their private information in this manner. The information is specific to a particular person, even if that data is "de-identified." And it may not be de-identified or "anonymized" while a coder reads through a person's private medical details. According to the HIPAA website: "Your health information cannot be used or shared without your written permission unless this law allows it. For example, without your authorization, your provider generally cannot: ... • Use or share your information for marketing or advertising purposes or sell your information." The problem with this type of research is that few safeguards exist to prevent batches of "de-identified" genetic and medical records from being sold to other entities for commercial research purposes. If someone removes the license plates from your car they don't then have the right to sell your car along with any other cars they might do that to. Privacy protections must be tightened. Notices must be sent to a patient each time personal information is used by anyone other than their doctor or her medical (not insurance or research) associates.