Let’s start right off by stating unequivocally that implanted medical devices are one of the real “miracles” of modern medical technology and improve the quality of life of thousands of patients every year. Like the automobile, they are a critically important technology that has changed the way we live.
According to a McKinsey Global Institute Study we spend $76B a year in the U.S. on implanted medical devices. The cost of these devices is rising faster than the cost of drugs. Jeffrey Lerner, the President and CEO of ECRI stated in the NY times last Thursday, “This is a dysfunctional market if you take the perspective of the consumer or public programs like Medicare.”
The article goes on to quote a cardiologist, saying about the medical device companies, “Why would you build a better light bulb that lasts longer if it is going to reduce your profits?” According to the same article in the times, these profits margins hover around 25%.
This is the second time we have pointed to the traditional manufacturing industry to demonstrate the need for third party collected, impartially or consumer generated quality data. The first time was asking if you would accept crash safety data generated by the car company that made the car, “Yup, we have safest car on the market!” Of course not. That is why there is a third party, the National Highway Traffic Safety Administration, that conducts crash tests and publishes the results to the public.
We have suggested that this model needs to be applied to the collection of quality data across healthcare. Third party collected patient generated data must become the gold standard of quality reporting in healthcare.
The article goes on to discuss the need for registries to keep track of what devices last longer. There are many important functions of device registries. Aaron Moskowitz, at the Biomedical Research and Education Foundation,( www.brefnet.org ), is doing important work in this area.
As these registries are developed, what is needed is the ability for patients to report consistently on their experiences with their implanted devices. It goes without saying that they are the best source of information regarding the quality of, and the experience of living with, the device. Rather than just collecting clearly important statistics regarding failure rates, replacement frequencies etc…, how much richer would this data be if it also contained a high volume of data related to the experience of actually living with each device.
This concept should be applied to all registries. As registries, combined with comparative effectiveness research, begin to guide a broader range of clinical decision making, efforts should be made to incorporate patient generated data into a broad range of registries. This would allow patients and their therapeutic partners, the caregiver, to make better informed decisions about what is going into their bodies.
Tuesday, November 10, 2009
Tuesday, October 13, 2009
Patient Driven Social Media
According to Wikipedia, Signal to Noise Ratio “is defined as the ratio of a signal power to the noise power corrupting the signal. A ratio higher than 1:1 indicates more signal than noise. In less technical terms, signal-to-noise ratio compares the level of a desired signal (such as music) to the level of background noise. The higher the ratio, the less obtrusive the background noise is.”
There is a lot of discussion these days about the application of social media to healthcare. Twitter’s recent valuation at $1B has put social media on the radar screens of even the most died in the wool doubters. There are a number of very smart healthcare people tweeting valuable information - if you can find it. Then, if you can find it, does it mean anything to you?
The fact is, for the average patient, as opposed to average healthcare geek, the signal to noise ratio may be even worse than 1:1. There are currently about 50M people on Twitter and 300M on Facebook making a lot of noise to go along with the signal. How can we utilize the power of social media in a way that helps the average patient get to the signal?
How about starting with the patient?
The first step is getting the patient hardwired into the delivery system. A patient that contributes clinically significant data to his healthcare team every time he’s at the office is going to be able to differentiate signal from noise much more effectively then the patient who is not a hardwired member of his care team.
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The second step is building a social network directly off of the patients hardwired input. Rather than having a network designed to accommodate any and every kind of input, signal or noise, have the network tied directly to the same system where the patient and his caregivers store the rest of his healthcare data.
Third, insure data security that is patient driven. The patient can have an “intro” page that gives just enough information to allow others they might want to communicate with to find them through a search function. The patient can then contact and share clinically significant data with those they believe can contribute meaningfully to their decision making process. The patient can decide what format this communication will take place in. The patient can request access from others that they want to talk to.
Social media is a powerful tool and there is no question it can and will be used to improve healthcare delivery. By placing the patient at the center we can create fact driven, patient lead networks that cut out the noise and focus on the signal.
There is a lot of discussion these days about the application of social media to healthcare. Twitter’s recent valuation at $1B has put social media on the radar screens of even the most died in the wool doubters. There are a number of very smart healthcare people tweeting valuable information - if you can find it. Then, if you can find it, does it mean anything to you?
The fact is, for the average patient, as opposed to average healthcare geek, the signal to noise ratio may be even worse than 1:1. There are currently about 50M people on Twitter and 300M on Facebook making a lot of noise to go along with the signal. How can we utilize the power of social media in a way that helps the average patient get to the signal?
How about starting with the patient?
The first step is getting the patient hardwired into the delivery system. A patient that contributes clinically significant data to his healthcare team every time he’s at the office is going to be able to differentiate signal from noise much more effectively then the patient who is not a hardwired member of his care team.
.
The second step is building a social network directly off of the patients hardwired input. Rather than having a network designed to accommodate any and every kind of input, signal or noise, have the network tied directly to the same system where the patient and his caregivers store the rest of his healthcare data.
Third, insure data security that is patient driven. The patient can have an “intro” page that gives just enough information to allow others they might want to communicate with to find them through a search function. The patient can then contact and share clinically significant data with those they believe can contribute meaningfully to their decision making process. The patient can decide what format this communication will take place in. The patient can request access from others that they want to talk to.
Social media is a powerful tool and there is no question it can and will be used to improve healthcare delivery. By placing the patient at the center we can create fact driven, patient lead networks that cut out the noise and focus on the signal.
Saturday, September 12, 2009
The Tort Reform Solution – Patient Interactive Reporting
In his speech this week the President agreed to explore solutions to the tort reform issue. P-IR presents a solution that is aligned with the goals of transparency, patient centered care and lower costs, and should be among the first solutions researched.
Wait, aren’t patients the ones that sue doctors in the first place?
They are, but why? Well first, because sometimes doctors, because they’re human, make mistakes which do serious harm to their patients. These are the legitimate suits. We can argue forever over whether or not awards should be capped, but that’s not the real problem. The real problem is what is called “defensive medicine”. The second reason doctors get sued is that their patients feel disconnected from them. Study after study shows if the patient likes the doctor, feels connected to the doctor, the same outcome, even negative, is much less likely to lead to a law suit. Recently it’s been demonstrated that a simple apology sometimes works to avoid litigation.
Patient Interactive Reporting (P-IR) is the Fix.
If there was a real time electronic record of the key aspects of each clinical visit, reported by the patient and collected by an unbiased third party, doctors could feel safe in practicing far less defensive medicine. Defensive medicine is practiced to create a record. Doctor’s legitimately fear that no matter how well intentioned, safe and reasoned there treatment is, if something goes wrong and they haven’t done everything, even if everything wasn’t really necessary, they are at a disadvantage when they get sued. This is a very, very expensive way to practice – expensive for everyone –and can even be used as a cover for the simple over utilization that is rewarded under current billing models.
Imagine a patient that tragically loses a foot to diabetes. Someone says, “You should sue.” Comes time for deposition and the patient says they never really discussed foot care, “He would look at my feet, sometimes, but I never knew why. “ This can, and does happen, even if the notes indicate foot care was discussed. If there is a patient generated record from each visit that indicates the doctor did discuss foot care with the patient most legitimate medical malpractice lawyers would simply give the client back his records after review knowing he has no case.
In addition to creating an unbiased record, P-IR allows for the inevitable oversights that occur in a rushed office to be corrected in real time. If the patient reports that the doctor did not discuss his hemoglobin a1c level with him, an immediate alert can be emailed to a designated person within the office and that issue can be addressed before the patient leaves the office or immediately after. Implementation of P-IR in the office should qualify the physician for a reduction in malpratice premiums.
Dignified Accountability
Lastly, by hardwiring the patient directly into his care team, P-IR creates a real therapeutic partnership between the patient and his caregivers. By engaging and empowering the patient the doctor has hardwired a strong relationship with that patient into the process that prevents the kind of sterile, detached interaction that leads to law suits. The patient is given dignified accountability for his care which leads to sharing in the responsibility for the outcomes, both good and bad.
P-IR represents a transparent, systemic, hardwired solution to the communication issues that lead to the gross overutilization caused by the practice of defensive medicine, disengaged patients and a culture of litigation.
Wait, aren’t patients the ones that sue doctors in the first place?
They are, but why? Well first, because sometimes doctors, because they’re human, make mistakes which do serious harm to their patients. These are the legitimate suits. We can argue forever over whether or not awards should be capped, but that’s not the real problem. The real problem is what is called “defensive medicine”. The second reason doctors get sued is that their patients feel disconnected from them. Study after study shows if the patient likes the doctor, feels connected to the doctor, the same outcome, even negative, is much less likely to lead to a law suit. Recently it’s been demonstrated that a simple apology sometimes works to avoid litigation.
Patient Interactive Reporting (P-IR) is the Fix.
If there was a real time electronic record of the key aspects of each clinical visit, reported by the patient and collected by an unbiased third party, doctors could feel safe in practicing far less defensive medicine. Defensive medicine is practiced to create a record. Doctor’s legitimately fear that no matter how well intentioned, safe and reasoned there treatment is, if something goes wrong and they haven’t done everything, even if everything wasn’t really necessary, they are at a disadvantage when they get sued. This is a very, very expensive way to practice – expensive for everyone –and can even be used as a cover for the simple over utilization that is rewarded under current billing models.
Imagine a patient that tragically loses a foot to diabetes. Someone says, “You should sue.” Comes time for deposition and the patient says they never really discussed foot care, “He would look at my feet, sometimes, but I never knew why. “ This can, and does happen, even if the notes indicate foot care was discussed. If there is a patient generated record from each visit that indicates the doctor did discuss foot care with the patient most legitimate medical malpractice lawyers would simply give the client back his records after review knowing he has no case.
In addition to creating an unbiased record, P-IR allows for the inevitable oversights that occur in a rushed office to be corrected in real time. If the patient reports that the doctor did not discuss his hemoglobin a1c level with him, an immediate alert can be emailed to a designated person within the office and that issue can be addressed before the patient leaves the office or immediately after. Implementation of P-IR in the office should qualify the physician for a reduction in malpratice premiums.
Dignified Accountability
Lastly, by hardwiring the patient directly into his care team, P-IR creates a real therapeutic partnership between the patient and his caregivers. By engaging and empowering the patient the doctor has hardwired a strong relationship with that patient into the process that prevents the kind of sterile, detached interaction that leads to law suits. The patient is given dignified accountability for his care which leads to sharing in the responsibility for the outcomes, both good and bad.
P-IR represents a transparent, systemic, hardwired solution to the communication issues that lead to the gross overutilization caused by the practice of defensive medicine, disengaged patients and a culture of litigation.
Thursday, August 27, 2009
Giving Disparities a Voice
Today's post was written by our excellent summer intern, Asantewaa Poku, who is headed off to graduate school at The Mailman School of Public Health at Columbia University.
The healthcare reform debate has brought to light a number of critical issues: driving down costs, covering the uninsured, creating competition, and improving quality. The crucial issue of healthcare disparities is getting lost in the haze of the debate.
The past and present unequal treatment of many vulnerable populations has translated into health disparities for groups lost in the current system. . In fact, these Americans might argue that perhaps what the system lacks most is a commitment to equality.
The Agency for Healthcare Research and Quality has defined disparities as those differences in experiences between one population group and another that manifest themselves in a variety of ways including poor communication between patients and caregivers, provider biases, poor health literacy, and most importantly poor health outcomes .
According to AHRQ, among non-elderly adults 17% of Hispanic and 16% percent of African Americans report they are only in fair or poor health compared to 10% of white Americans. A study by the National Center for Health Statistics found that African-American women have the highest death rates from heart disease, breast and lung cancer, stroke and pregnancy among women of all racial and ethnic backgrounds. The National Business Group on Health found that rates of heart disease mortality have decreased the most for whites and the least for African Americans, for whom mortality rates for heart disease are 50% higher than their white counterparts. Cardiovascular disease is the leading cause of death in the United States and has a direct cost of $296 billion. Real healthcare reform must address the human and financial costs of these disparities head on.
How do we give disparities a voice?
It is easy for stakeholders to lose sight of the issues created by disparities. Real healthcare reform must be patient-centered. By giving each patient a voice in their care we assure better healthcare for all.
In Unequal Treatment, the Institute of Medicine’s disparities report, the importance of patient-centered reform is stressed. Both patients and providers need to be educated and change ingrained behaviors. Patients must learn to take a more active role in clinical decision making, take responsibility for their treatment plan and self care. Providers must learn to become more aware of their unconscious biases and more understanding of the cultural diversity of their patients. By giving both participants tools that foster better communication and overall care we can begin to close the gap in healthcare outcomes for all populations.
By hardwiring the patient’s voice into the clinical suite, we assure that every patient is heard.
The healthcare reform debate has brought to light a number of critical issues: driving down costs, covering the uninsured, creating competition, and improving quality. The crucial issue of healthcare disparities is getting lost in the haze of the debate.
The past and present unequal treatment of many vulnerable populations has translated into health disparities for groups lost in the current system. . In fact, these Americans might argue that perhaps what the system lacks most is a commitment to equality.
The Agency for Healthcare Research and Quality has defined disparities as those differences in experiences between one population group and another that manifest themselves in a variety of ways including poor communication between patients and caregivers, provider biases, poor health literacy, and most importantly poor health outcomes .
According to AHRQ, among non-elderly adults 17% of Hispanic and 16% percent of African Americans report they are only in fair or poor health compared to 10% of white Americans. A study by the National Center for Health Statistics found that African-American women have the highest death rates from heart disease, breast and lung cancer, stroke and pregnancy among women of all racial and ethnic backgrounds. The National Business Group on Health found that rates of heart disease mortality have decreased the most for whites and the least for African Americans, for whom mortality rates for heart disease are 50% higher than their white counterparts. Cardiovascular disease is the leading cause of death in the United States and has a direct cost of $296 billion. Real healthcare reform must address the human and financial costs of these disparities head on.
How do we give disparities a voice?
It is easy for stakeholders to lose sight of the issues created by disparities. Real healthcare reform must be patient-centered. By giving each patient a voice in their care we assure better healthcare for all.
In Unequal Treatment, the Institute of Medicine’s disparities report, the importance of patient-centered reform is stressed. Both patients and providers need to be educated and change ingrained behaviors. Patients must learn to take a more active role in clinical decision making, take responsibility for their treatment plan and self care. Providers must learn to become more aware of their unconscious biases and more understanding of the cultural diversity of their patients. By giving both participants tools that foster better communication and overall care we can begin to close the gap in healthcare outcomes for all populations.
By hardwiring the patient’s voice into the clinical suite, we assure that every patient is heard.
Friday, August 7, 2009
Increasing the Credibility of Quality Measurement

When we talk quality in healthcare, what are we really talking about? We’re talking about the quality of care received by the patient from their clinician. Not just the procedures done, the tests ordered or the drugs prescribed, but the quality of the information given to the patient and the clinician’s ability to engage and empower the patient to utilize that information to take better care of themselves.
Everyone should read Kristen Gerencher’s article in the WSJ online, Imagine Doctors, Patients Talking.
She makes a number of good points, not the least of which is that when a doctor and patient build a therapeutic partnership based on “mutual honesty and transparency” the patient will often choose less expensive care options. This is because they trust the doctor to tell them, honestly, if they don’t really need the most expensive test or procedure. This trust will also facilitate the patient feeling accountable for complying with the doctor’s instructions on taking care of themselves. They want the doctor to trust them, too.
As a former state and federal prosecutor, credibility is an issue I’ve examined, and cross- examined, up close and personal. If we really want credible measurement of healthcare quality and efficiency we need to move beyond self reported clinical data. We need third party collected, patient reported data from as close in time to the clinical interaction as possible.
In a 2008 National Business group on Health report, Transparency: Large Employers’ Perspective, the NBGOH indicates that in a survey of 120 employers, 56% of whom had more than 20,000 employees, one of the key findings was that employers should “continue efforts to build credibility of quality and efficiency measurement”. Indeed they should.
How can this credibility be hard wired into the quality measurement system?
By having a third party collect it, directly from the patient, immediately after the clinical interaction. By collecting the data through easy to use and understand health information technology so that the patient is empowered to participate directly in measuring and improving the quality of their care. By utilizing technology to build “mutual honesty and transparency”, thereby strengthening the therapeutic partnership between the patient and caregiver.
If we want credibility, if we want patients to trust their caregivers, if we want the billions of dollars of funds coming into healthcare for HIT to lead to better outcomes – if we want to really understand what is happening when a patient sees their caregiver, so that we can continually improve the quality of that interaction– all we need to do is give the patient a voice.
Thursday, July 30, 2009
Why Obama is Losing the People

The big story today, cover of the WSJ and The NY Times, is that the administration is losing public support for health care reform. Of course they are.
Up until let’s say a year ago, for the most part, other than an occasional report on rising costs or a story of some particularly bad case of someone being wronged by the system, most of us, the patients, just cruised along griping about waiting at the doctor’s office or how much things cost, but generally feeling like we were getting good care and there was nothing we could do about the other stuff.
Now the cat’s out of the bag. We have been inundated for months with all kinds of details about how health care works: doctors get paid to order tests - not to keep people healthy, we get treatments that are unproven and expensive, doctors and patients don’t communicate and worse. We understand the relationship between health care costs and businesses closing. We understand that working people lose their insurance coverage every day. We hear that other countries insure everyone, health care costs less and people live longer.
Patients have been empowered with information, and guess what, we want answers. It turns out that when someone takes the time to engage the patient, we understand pretty well. Is it possible they weren’t counting on that?
How can the administration get the people back on board?
By assuring them that they will be heard. By making sure that their voice is hard wired into the billions dollars that doctors will be paid to utilize HIT technology. By promising, and then making good on that promise by writing it into the bill, that the definition of meaningful use of an EMR, the definition of quality, requires the ability for the patient to input clinically significant data about the care they're receiving, and their understanding and their input into their treatment plan, directly into their medical record. By insisting, and paying for this data to be collected, analyzed and acted on to improve therapeutic partnerships between patients and caregivers.
Hardwire the patient - the voter, the employee, the premium payer - into health care reform and they will give their support even if it hurts a little.
Bill Fox, JD, MA
Executive Director
CPIR
Thursday, July 23, 2009
Health Reform - Where's the Patient?

President Obama made a big speech last night. I watched it. Then I watched two hours of commentary about it on cable. This morning I read the transcript of the speech, and read the N.Y. Times and some other stuff about it on line.
Guess what - despite all the talk about patient centered care we've been hearing, not one word from any of the pundits about how the patient might actually be able to contribute information - data - about what's happening when he sees his doctors that could reduce the cost and raise the quality of health care. Given that the patient is involved in every single billable transaction with his health care providers, this struck me as a sort of major oversight.
What sort of information might the patient have?
Did the doctor apply the latest evidence based standards for his condition?
Did the doctor effectively communicate what he needed to do to manage his condition?
Did the doctor seek to form a therapeutic partnership with him facilitating dignified accountability and better self management of his condition?
The ability to measure just these three things could bring about deep, game changing improvements and value to our health care system.
What kind of changes?
• Empowered Patients
• Expanded Transparency
• Mapped Performance
• Intensified Accountability
• Intensified Compliance
• Improved Utilization
• Improved Outcomes
• Protected Consumers
• Reduced Fraud
• Reduced Capita Spending
The National Center for Patient Interactive Research is developing innovative, technology driven approaches to the successful engagement of the patient in the care process, and to creating a true therapeutic partnership between the patient, the physician and other care givers.
Patient-generated data can help to transform the current health care model. At the moment, this is the only voice which is not being heard on a systematic, standardized and measurable basis.
The patient should, and can, have a central role in developing their treatment plan. The communication facilitated and fostered by this therapeutic partnership is the key to improving health outcomes related to chronic diseases and reducing disparities among vulnerable populations.
Third party collected, patient generated data is the gold standard of unbiased quality measurement. This data must be analyzed to understand what is and is not working. This will bring confidence, integrity and transparency to the process.
Bill Fox, JD, MA
Executive Director
CPIR
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