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Reengineering the Health Infrastructure

The U.S. healthcare system has exhibited jagged cracks for a long time but not until Covid-19 did we realize how extensive the problem really is.  Over the past several years we have fostered a system that has forgotten its primary mission: caring for patients and healing the sick.  This mission reflected in the Hipporcratic Oath, pledged by every physician when they graduate medical school is one whch all healthcare professional on the front lines of care live by. The oath is as follows:

I respect the hard-won scientific gains of those physicians in whose steps I walk and gladly share such knowledge as is mine with those who are to follow.

I will apply for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism

I will remember that there is art to medicine as well as science and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug. 

I will not be ashamed to say “I know not,” nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery. 

I will respect the privacy of my patients for their problems are not disclosed to me that the world may know.  Most especially must I treat carefully in matters of life and death.  If it is given to me to save a life all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty.  Above all, I must not play at God.

I will remember that I do not treat a fever chart,  or a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.  My responsibility includes these related problems, if I am to care adequately for the sick. 

I will prevent disease whenever I can, for prevention is preferable to cure. 

I will remember that I remain a member of society with special obligations to my fellow human beings, those sound of mind and body as well as the infirm. 

These principles of care were part of the culture of care until the second half of the 20th century when, for a variety of reasons, a focus on the budgets of healthcare institutions replaced the ethics of charity and compassion.  This was particularly evident when patients sought care at a healthcare institution where a condition of receiving care was based on the patient’s ability to pay the bill.  It showed up at the pharmacy where the price of many vital life-saving medications are no longer affordable to the average individual.

For example, in the middle of the largest medical crisis we have ever experienced, one young man in Georgia who was feeling ill went to the ER of the local hospital to get a Covid-19 test.  The test was administered but was never sent out.  The young man was sent home without a result and with a bill of $9,000 for the test.  This story which was reported on the CBS morning news last week is a mere suggestion of what  has been going on and what is coming.  There are hospitals in America that have recently instituted a new practice of hiring debt collectors who threaten patients who have delinquent bills with court appearances  and  jail time. The patients are given the choice of setting up a payment plan, having their wages or bank account garnished or have a lien put on their property if they fail to comply.  If the patient fails to show up in court they can be arrested and there are judges who will sentence them to jail time, whether they are sick or healthy at the time.

(When Medical Debt Collectors Decide who Gets Arrested: Pro Publica, http://features.propublica.org/medical-debt/when-medical-debt-collectors-decide-who-gets-arrested-coffeyville-kans).

To date  4/6/20  there are approximately 350,000 reported cases of Covid-19 in the U.S., over 1.2 million worldwide. As we try to grapple with these numbers and the strain they put on the healthcare system, we are faced with some startling realizations that we did not even think about a few weeks ago.  Large urban hospitals and academic teaching centers,  which today derive so much of their income from elective surgeries and outpatient procedures are feeling the pinch  as they are being asked to cancel all non-essential procedures to enable the system to handle  Covid-19 patients.   The revenue impact is devasting and could result in many closures, especially in areas where they are already too few public hospital.

Many rural hospitals, that have been struggling for a long time to make ends meet are also on the brink of closure.   About 60 million peple, nearly one in five Americans,currently live in rural areas of the United States and depend on their local hospitals for care.  In 2019, 18 rural hospital closed because they did not have the capital to keep operating and also suffered from severe doctor shortages.  Across the US.119 rural hospital have closed since 2010, including locations in Texas, Oklahoma, Tennessee, Kansas, Georgia, Alabama.and Missouri. Rural hospitals serve complex patient populations who tend to have multiple chronic conditions, are older and more economically disadvantaged. The closings leave these rural American residents with nowhere to go for care.

Although no one could ever have anticipated this pandemic, engulfing us as quickly as it did, who would ever have believed that in our nation, the wealthiest nation in the world, we would experience such severe shortages of equipment and supplies to cope with this emergency?  Who would have believed  that with the current infrastructure,  major hospitals  that derive their operating budgets from elective surgeries to  keep them solvent could fall into bankruptcy?  Who would ever have suspected the level of unpreparedness of our leaders and our healthcare system?

Initial lessons learned from Covid-19 are multifold and point to the hard fact that we must undergo radical change that involves a complete reengineering of our healthcare infrastructure, pricing and delivery of care services, if we are to serve the needs of the citizens of the United States of America. There are some obvious actions our nation must take, once we have gone through the height of this pandemic:

  1. Congress must pass legislation that completely revamps the pricing structures and reimbursement strategies to  make it possible for all citizens to receive care at an equitable price for that care including: basic healthcare, in-hospital procedures, medications and co-pays.
  2. Our leaders must develop strategies to foster an environment where hospitals and care clinics are able to remain solvent and serve the communities where they are located, while protecting the basic principles of our free enterprise syste.
  3. Oversight of the pharmaceutical industry and healthcare payers needs to be put into place with stronger regulation.
  4. Greater assistance needs to be provided to medical and nursing schools to develop a strong corps of healthcare professionals (particularly primary care doctors, nurse practitioners, nurses  and physician assistants who are trained to address and care for the sick in every corner of the U.S.
  5.  The supply chain needs to be restructured  so we are dependent only on our own U.S. manufacturers for vital supplies, equipment and medications that are  made in America, so that the shortages experienced during Covid-19  will never happen again.
Health Costs rocket newspaper

Cost of Care, A No-Win Situation in the United States


When it comes to their healthcare, most patients do not think about the cost of care until they receive a bill for medical treatment, or when they have to decide what health insurance plan they will sign up for. To make matters more confusing for patients, the unceasing political debate on how to reduce health costs, which approximate more than $3.7 trillion a year, or 18% of the GDP, goes on and on, with no resolution in sight.   Among the issues are:

Costs of procedures, screenings and treatments such as mammograms, and MRI’s vary by institution and location, even within a specific geographic area. There are no easy ways to determine and compare those costs and patients often end up choosing the most convenient location, discovering the cost only when the bill arrives.

Costs of prescription drugs have escalated tremendously in the past few years, and do not, in the majority of cases, reflect the cost of bringing the drug to market. In the past 10 years, the prices of Epi-Pens, insulin, and asthma inhalers, among many other medications have jumped to unaffordable levels.

Ten years ago, Epi-Pens cost approximately $100 for a pen, which is used to counter an anaphylactic reaction to an allergic substance such as peanuts.  Today that same pen with no change in the formula is between $600 and $700 per dose.  Basically, this is a medication delivery system that consists of epinephrine which costs as little as $1.00 in its pure form. Generally, the pens are good for one year, after which time they expire because the medication contained in the pen loses its effectiveness.

For a drug that is life or death to a patient with Type I diabetes, insulin has been prominent in the news recently for good reason. The cost  of the four most popular types of insulin has  tripled over the past decade; and  the out-of-pocket prescription costs for patients have doubled. In 2016, the average price of insulin rose to $450 per month, ($5,700) a year up from $2,900 in 2012.  By comparison, the cost of living rose about 6.5 percent during that same time period.

Not only are the prices extraordinarily high and rising, but in comparison to other countries that have a national health system, Americans are paying significantly more for the same drug at the same dose. For example, the price of 5 pens of Lantis, a common insulin, costs approximately $113 in Canada; 5 pens of Humalog, another popular insulin costs $65.In the U.S. those same drugs at the same dose both retail for about $476.

To make matters worse, large Pharma companies appear to be in lock skip with respect to pricing. There are no laws to effectively regulate what they are allowed to charge and drug makers say they cannot reduce list prices because it is not feasible to do so in the current system where middlemen and insurance companies demand discounts, rebates and other price concessions that are calculated as a percentage of the list price. Pharma contends that they provide these concessions to guarantee that their drugs will be covered. This would appear to be a vicious cycle that puts patients at risk, as some patients are required to ration their drugs to afford them.

There are also hidden health costs that patients are faced with, including the annual, escalating deductibles that most health plans build in. Talk about sticker shock, there are health plan deductibles that have risen as much as 75% in the past 5 years. When patients go to get their medications or agree to a procedure, early in the year, before they have met their deductible and unless they have studied the fine print, they are in for a whopping surprise.

 Nearly one-third of Americans face each day not knowing if they can survive a medical crisis. It is estimated that neatly 10 million adults with year-round medical insurance accumulate medical bills that they cannot pay off. Additionally, there are 44 million individuals in the U.S. who have no health insurance.  These individuals have to make choices between receiving a life-saving medical treatment, or paying their mortgage; between obtaining their prescription or feeding their children. It is estimated that bankruptcies resulting from unpaid medical bills affect over one million individuals each year, making health care the No 1 reason why individuals file for bankruptcy.

To further aggravate cost of care to the American patient, the U.S. spends approximately twice what other high-income nations do on health care but has the lowest life expectancy and the highest infant mortality rates. The WHO (World Health Organization) reports that US health outcomes are actually below those of other developed countries.   We have higher than average rates of infant mortality, greater incidence of low birth-weight babies and high incidences of breast and prostrate cancer.

The time has come for the American people and their representatives in Congress to take a hard look and a hard stance on the cost of care, and work together to do something about it.  It is obviously self-defeating when individuals ration their medications and end up in the emergency room with multiple serious conditions.  It is also unconscionable when, in a country with the riches and quality of life that so many enjoy, there are also so many who do not have basic healthcare at an affordable price.  Further it is shocking and appalling that our country, which has always prided itself on its ability to make advances and foster new discovery and innovation in medicine, has rankings in infant mortality, low birth rate and various cancers that are at an all- time low, compared to the rest of the world. The time for change has come and it is now.

 

 

 

 

 

 

A face with a technological background

Artificial Intelligence: No Simple Answers on the Horizon as the Technology Marches On

 

Like almost everything else in healthcare, the impact of Artificial Intelligence (AI) will first be experienced by a variety of clinicians in a hospital setting, but ultimately, AI will be a technology that radically changes the patient-clinician relationship, with the patient as the ultimate beneficiary. This was evident at the 5th annual World Medical Innovation Forum, (WMIF), held last week in Boston, MA, where over 1,800 individuals from around the world who are involved in diverse aspects of healthcare and innovation gathered.

Throughout the conference there were a few recurring themes worth noting:

That AI will provide the intelligence and objective data to medical professionals that empower them with critical information they need to better identify medical issues and make diagnoses.

That AI will produce powerful tools to help medical practitioners make complicated decisions on behalf of their patients

That AI will foster “engagement” among clinicians and patients — a much touted goal in care today.

That AI will “re-humanize” everyday care by providing clinicians with the opportunity to carry on real face-to-face focused discussions with their patients, in a setting where the clinician no longer has to be sifting through information and filling out forms during that encounter.

That AI in combination with genetics, genomics, and robotics will change the face of medicine forever from what we currently experience, to a much more personalized, information-based approach which eliminates much of the guess-work and is truly based on proven best practices.

This transition will not come without pitfalls and serious ethical issues including:

How to monitor the data that is has been aggregated, for accuracy, bias and transparency?

How to insure patient privacy when there is so much data available in many scattered silos, in spite of the fact that this data is  anonymized?

How to ensure that AI data gathered is secure and protected and is not misused for evil purposes?

How to structure AI technology so that it helps to reduce rather than increase the cost of care, and reduce the disparities in care among diverse populations?

This technology , that is going to profoundly impact families, communities and society, is already used in many facets of care, including: radiology, pathology, ophthalmology, cardiology, neurology, cancer care, and  mental health.It became evident from many presentations at the WMIF,  that this engine of AI innovation is moving forward rapidly.  What is  less clear is who will manage these huge and invaluable bodies of knowledge; how  will  AI will  be regulated and controlled, (which must happen, if there is to be any semblance of equity for all);  how  will we build a  sustainable model/infrastructure  that can benefit everyone in the system and not just the select few.

If it is indeed the place of AI not to merely replicate human tasks, but to extend human knowledge to benefit mankind, then let’s ensure that  during this evolutionary process, all stakeholders, including: clinicians, healthcare institutions, rehab specialists,  technologists, pharmacists and  patients  are included at the table, as these thorny issues are ironed out.

patient experience graphic

How to be Engaged in the Face of Adversity: Patient Experiences that Rule!

 

From the lens of a patient who has recently experienced far too many interactions with the healthcare system, I now realize how difficult it is to be participatory when you are in a place where you are not really thinking about anything but how to get through the next couple of days, free of pain, and without medications which dull the senses, and can become addictive.

I consider myself to be an empowered patient and I thrust myself into managing my health. I offer feedback to my doctors, never hesitate to speak up and ask questions, tap the wisdom and advice of my peers and encourage my clinicians work collaboratively with me to evaluate the risks/benefits of treatment plans and options. I use data including the reports and notes that are in my electronic health record and information from friends and colleagues who have had some experience with the same or similar conditions. I go the next step and search the internet for relevant information that applies to my particular health situation. I weigh and measure every issue that arises and remain steadfast in my determination to approach, head on, whatever comes up. My patient experience is that.  in spite of my diligence, bad things can happen to good people.

Over the past ten years I have had two hip replacements and two hip revision surgeries, back surgery and two episodes of breast cancer. Metal poisoning from my hip protheses led to the hip revisions and the loss of 50% of the muscle in both hips leading to a hip dislocation ultimately putting me at high risk for this to happen again. Thus, my life has changed. I had always been an active individual who moved decisively and constantly, approached challenges head on, and did not need to think too much about the consequences.  Suddenly I have been forced to have an awareness of every move I make.

It would be easy to get discouraged under these circumstances, but I am determined to make the most of the situation. Having a great provider team with whom I am in frequent contact, and who are in contact with one another has made it possible for me to experience good care, even in the face of such adversity.

Here are some actions that my situation has taught me, that are intended to ensure that I will experience the best outcomes.

They include:

When making a decision on surgery or a treatment for a condition you have been diagnosed with always research all of your options and be sure to ask your doctors all of the questions that you have.

Be sure you are satisfied that you have full information and that information is available at the point of care.Appoint a person to be your advocate during those times when you might not be well enough to manage and monitor your own care. It should be an individual in whom you have complete trust and with whom you can communicate as you are able.As your treatment evolves be sure you understand, and are in agreement with everything that is recommended for you.

Be sure that you understand the purpose for all medications and dosages you are given. Do not accept vague explanations regarding prescriptions, treatments and procedures.

Be fully informed about your scheduled future appointments, tests, procedures and  other medical  services, so that nothing falls through the cracks.

When you are released from the hospital, or a rehab facility, be sure that you leave with full information on new medications prescribed, the follow up treatment suggested, follow up appointments and home services. Double check to see that you have prescriptions for all of your medications and a viable way to get those prescriptions filled quickly.

In a few weeks, (on May 1 and 2), at the Joseph P Martin Conference Center at Harvard Medical School a group of healthcare professionals, patient advocates, practitioners, educators, thought leaders, and patients who are transforming the patient experience will gather to discuss ideas and present stories, guidelines and solutions  about their interactions with the healthcare system.  You might want to attend this conference.  (For more information go to https://www.patientsymposium.com/

Being a participatory patient is complex because nothing is static where your health is concerned. As an empowered patient you quickly realize that it is imperative to have open channels of communication with your clinicians so that you always know the next steps. Your outcomes are going to be a matter of your choices, based on full information and collaboration with your healthcare team. Hopefully your patient experience will be positive and successful.

 

 

The Illusive Solution for Medication Adherence

 

Keep a watch…on the faults of the patients, which often make them lie about the taking of things prescribed. For through not taking disagreeable drinks, purgative or other, they sometimes die. Hippocrates, Decorum

Medication adherence is complex, multidimensional and has long been one of the most vexing problems in American healthcare.  It is also one of the causes of America’s skyrocketing health costs.  Studies indicate that in spite of grave concern on the part of our leaders. and many efforts to find solutions, nearly 50% of patient populations do not adhere to their medications and that non-adherence is estimated to cost the healthcare system $100 billion annually.

 

Dr. C. Everett Koop MD Former US Surgeon General from 1982-1989 under Ronald Regan wrote: “Drugs don’t work in people who don’t take them!”  That pretty much sums up the problem.

 

Various interventions, from providing coaches to mentor patients and help them establish good habits regarding management and monitoring of health conditions and medication, to providing patients with various tools such as pillboxes, physical and virtual, that include bells, whistles and other intrusive noises that pop up, has not made a significant difference. Over the short period of time that smartphones have become ubiquitous, there have been thousands of apps developed to track and send reminders to patients, or their family members and caretakers, that it is time to take their medication. Short term these reminders often work for many patients. Over the long term none have proven to be the magic bullet.

 

Just this week, the FDA announced approval of a digital pill that lets the doctor know when a patient has taken their medication. Abilify MyCite (aripiprazole with sensor) has an embedded sensor that sends a message to a wearable patch that medication has been taken. This allows the patient and doctor to track the medication use via smartphone.  First introduced in 2012, this pill is now approved by the FDA for treatment of schizophrenia, manic depression and bipolar disorder.  However, it is a stretch to think that any doctor will have the time to monitor each of their patients every day for every pill taken, and that patient, in fact, will take their medication.

 

A national survey of 1,020 adults (age 40 or older) with chronic conditions, reported the top barriers to compliance as “Forgot” (42%) “Ran Out” (34%). “Trying to Save Money” (22%)”. Other barriers: “Didn’t like taking It:” “Wasn’t working;” “Had side effects;” “Didn’t think it was needed,” make up the rest.

 

 

Drug manufacturers, too, have been working to improve medication adherence by developing pills that only need to be taken once-a-day and by packing medications in user-friendly dosage forms.
In a recent report, the IQVIA Institute for Human Data Science recognized Medisafe®, a personalized mobile health platform for medication management with four million patient and caregiver registered users globally, as the “Top Free & Publicly Available App for Medication Management.” The report, is entitled “The Growing Value of Digital Health, Evidence and Impact on Human Health and the Healthcare System,”. The IQVIA was formally known as the IMS Institute for Healthcare Informatics.

 

Medisafe is a personalized cloud-synched medication reminder app designed to help patients adhere. One would think that this could change the adherence rate, and for many patients it does just that for a period of time.  However, as good as the app is, according to an executive from Medisafe® after seven months many patients stop using it – some because they have finished with the medication, but others because they, like all patients, tend to ignore the need for their medications over time.  The company recently announced that they have developed the first mobile health wearable
medication app loaded on an Apple Watch.

 

Knowing that we live in an era when efficacious drug therapies exist and new ones are being developed at a rapid rate; an era when effective intuitive and smart apps are being developed and refined to help keep patients and caregivers on track with medication adherence, it is discouraging that we cannot yet seem to move the medication adherence needle beyond the 50% mark.

 

Do the new digital pills and Medisafe® type  apps make a difference?  Somewhat, but they will not resolve the problem, because this is not a technology issue, it is a people issue.  It is an issue for clinicians who must be more collaborative and diligent in explaining and ensuring that their patients understand why they need a medication and how to take it properly.  It is an issue for patients and their caretakers who must commit to a treatment and follow through.  It is an issue for the healthcare system that must find better ways to help those patients who do not have the health literacy to understand the importance of their treatment protocols, or who cannot afford their medications and thus do not fill their prescriptions.  Until we can solve the “people” issues, all the apps, bells and whistles in the world are not going to resolve this problem.

Care Coordination, The Holy Grail of Good Medicine

Appropriate patient care revolves around a team of individuals that includes the patient, a variety of clinicians and other providers, caretakers and patient advocates. The members of this team must collaborate to ensure that the best possible decisions are made on the patient’s behalf. As clinicians, scientists and innovators develop new technologies to redesign health care to make the patient experience more efficient, effective, and better, coordination of care with the patient at the center must always take priority.  Some of the hallmarks of care coordination include:

• Is there proper communication and full information sharing going on?
• Is one provider serving as the gatekeeper, insuring that everyone who should be involved is kept informed?
• Is care well- coordinated, particularly when there are multiple providers and in pre- and post-operative situations that involve teams of clinicians:  primary care, specialists, nurse practitioners, Fellows, etc.

My recent experience at MGH represents care coordination at its best. In 2014 I had a total hip replacement.  At the end of June 2017, upon return from a trip to Japan that involved extensive climbing and walking, my hip suddenly became extremely painful. What could this be?  By the time I returned to the US I was running a fever. I contacted my primary care physician and my hip surgeon. Blood tests revealed that all of my inflammatory disease markers were significantly elevated.  Additional tests including MRIs of the hips and back and blood work that tested for metal in my system indicated that the painful hip was filled with fluid. That was drawn out by a team of radiologists.

Care coordination for all of this fell to my hip surgeon who set up an email chain that included my primary care doctor, my rheumatologist, my back surgeon, the radiology team and ultimately a specialist who performs hip revision surgery. Additionally, I was kept in the loop by the surgeon who texted me at least three times a day to check on my fever, pain level, how I was feeling and to keep me appraised of test results as they came in.

All of the tests on the fluid that was withdrawn from the hip came back negative for infection. I was presenting with a very unusual case of an individual whose hip protheses that was put in place in 2014 was deteriorating. Metal was flaking off into the muscle tissue which in turn caused the large pool of fluid to collect. This was a very rare occurrence   The hip surgeon who had done thousands of total hip replacements using the same prothesis told me that six of his patients over a period of several decades had developed this problem.

On September 8, I had surgery and am recuperating with all of the restrictions regarding mobility that hip surgery requires.  Although the underlying cause of this problem remains a puzzle to everyone on the team, I continue to be totally impressed with the quality of care that I received.

I attribute such good coordination to the fact that I get all of my healthcare in one location where my many clinicians can email each other and view the notes in a common health record, enabling them to work together for smooth coordinated care. In my situation, which was by no means clear cut, everyone was focused on what the best course would be for me, the patient, and I was kept informed and consulted at all times.

The availability of the MGH patient portal also made it easy for me to track all of my labs, tests and provider letters.  I was able to send off quick communications to my clinicians when I had questions, I was able to schedule and view appointments and find links to helpful information.

All patients want health care experiences like this. The factors that made it possible were as follows:

1. Easy to use tools that enabled quick and effective communication with my providers, including mobile apps that enabled me to enter updates and access the latest information.

2. The appropriate resources and instructions that enabled me to manage much of my own care.

3. Transparency in all aspects of my care.

In summary, coordination of care is made much more difficult when all of a patient’s providers are not under one umbrella organization.  However, it remains an essential hallmark of good medicine that needs to be given much more attention than it currently receives.  Care coordination will not happen without the active participation of the patient, and it is critical that clinicians and providers everywhere embrace that practice.  It is also essential that going forward, patients, clinicians and medical institutions work together to achieve as much transparency in care practices as possible, so that everyone is on the same page and there are no surprises.

Advances in Cardiovascular Disease: Innovation and Technology Bring Better Outcomes to Patients

I recently attended the 3rd annual World Medical Innovation Forum, a symposium based upon collaborative partnerships among academia, industry and government to foster innovative solutions to improve healthcare. This year, the forum focused on cardiovascular and cardio-metabolic care.

The three-day symposium launched with “First Look” presentations from 19 scientists, whose labs are engaged in cutting edge discoveries that will impact treatment of many forms of cardiovascular disease (CVD) from aortic valve disease and atrial fibrillation; to understanding the causes and outcomes of CVD in the context of what precision medicine can bring to the table.  Other exciting work includes the study of disease patterns of cardiac disease in cancer patients, diabetes and, hypertension and what can be done, going forward, to change the development and outcomes of these condition.

The importance of focusing on cardiovascular disease cannot be understated.  Anthony Rosenzweig, MD, chief of cardiology and co-director of the Corrigan Minehan Heart Center at MGH, describes a paradox at the center of heart disease: “On the one hand, the last half-century has seen a dramatic drop in death rates among patients hospitalized for a heart attack. On the other hand, survivors often go on to develop chronic conditions that are expensive and ultimately deadly,” he said.

The implications are quite clear. Data compiled from a collaborative study of the American Heart Association the Centers for Disease Control and Prevention and the National Institute of Health, from more than 190 countries, reveals that heart disease remains the No.1 global cause of death with 17.3 million deaths each year. Diabetes, stroke and other cardiovascular diseases are listed as the underlying cause of 801,000 deaths in the US alone.

Each 0day approximately 2,200 Americans die of CVD, an average of 1 death every 40 seconds. CVDs claim more lives each year than all forms of cancer and chronic lower respiratory disease combined. About 92.1 million American adults are living with some form of CVD or the after-effects of stroke. Direct and indirect costs are estimated to total more than $316 billion; that includes both health expenditures and lost productivity.

The  World Health Organization (WHO) also reports that CVD is the #1 cause of death globally.  “An estimated 17.5 million people died from cardiovascular disease in 2012, representing 31% of all global deaths. Of these deaths, an estimated 7.4 million were due to coronary heart disease and 6.7 million were due to stroke. Over three quarters of these deaths occurred in low- and middle-income countries”.

 

What was unique about this World Medical Innovation Forum were the presentations of medical professionals and scientists who are shaping the future of cardiovascular disease with discoveries that combine innovative therapies, with digital technologies.

For example, one lab at Harvard Medical School is investigating ways to achieve better outcomes for patients with aortic stenosis, a disease devastating to an aging population.  Targeting the problem at an early stage and substituting therapeutics for invasive surgeries is one of their goals.

Other presenters talked about their efforts to gain insights into the relationship between cardiovascular disease and an individual’s gene profile.  There is also a group of researchers analyzing the relationships between cardiac fitness and long term cancer survival. There is cutting edge work being done in the area of diabetes management to reduce the long-term risks of heart attack and kidney failure in patients with diabetes.

 

This culture of innovation, that is looking at disruptive technologies and searching for better solutions to curb and eventually eliminate many varieties of cardiac disease, is pushing the boundaries of research to new heights.  At the end of the day the impressive work outlined at the Forum will pay off. Science will have taken another giant leap and patients will experience better, longer lives with less incapacity and pain. We have a way to go, but the future is promising.

How Data Registries Help with Full Information at the Point of Care

The practice of medicine is shifting from episodic patient care to care focused on addressing many broad-based, unique, sometimes esoteric health conditions. Fueling this transition is a new focus on patient reported outcomes and health data registries that aggregate a patient’s information in one central database where it can be accessed by patients, clinicians, and researchers as needed. All of this is based upon the premise that good healthcare delivery requires clinicians to have full information at the point of care.

A patient-reported outcome is a health outcome that comes directly from something a patient has experienced. It is used to better understand the efficacy of a particular treatment as perceived by the patient, in contrast to an outcome that has been interpreted by a clinician. There are many efforts underway to develop and test mechanisms for collecting patient-reported outcome data and deploy it to more intelligently improve treatment choices.

Clinical data registries are also emerging as a new way to collect, record and analyze patient information, and the care patients receive. These registries consist of data that is aggregated to reflect patterns among patients who share a common basis and need for care. They harness the power of information technology to capture statistically-relevant, evidence-based patient data on a specific disease that assists in formulating decisions regarding the most optimal approach and best outcomes.

There are many clinical data registries, including those that focus on a disease or condition (e.g., cystic fibrosis), a procedure (e.g., coronary artery bypass grafting surgery) or registries that track the performance of a device (e.g. artificial joints). Information from clinical data registries is used to compare the effectiveness of different treatments for the same disease or condition, and to evaluate different approaches to a procedure or to monitor the safety of implanted devices. This information is also used to support health care education, accreditation and certification.
Approximately 7,000 rare diseases have been identified globally, the majority of which are of genetic origin, although there are non-genetic causes as well. Rare diseases are thought to affect a small percentage of the population. However, the numbers indicate that there are nearly 350 million people worldwide living with a rare disease, about 30 million of them are Americans. It would appear that rare diseases are not so Rare!
Data registries are particularly useful tools to help populations with rare diseases. There are many situations where electronic health records (EHRs), fail to capture the critical data necessary to treat those living with a rare disease and to advance rare disease research. These registries represent a dynamic and efficient alternative, and enable connectivity to laboratories, radiology clinics, transcription services and other clinical systems.
Additionally, patients often receive care from different organizations. Each time a patient participating in a registry sees their health care professional, or is admitted to a hospital, detailed data is recorded. Health care professionals then send this encrypted data to the clinical data registry through a secure web portal or from their electronic health record. As data enters the clinical data registry, quality checks are performed to ensure the correctness and completeness of the data. If something is missing or outside of the expected range, registry staff contact the submitting health care professional asking them to review and verify the data.
The social network, Patients Like Me, recently reported that it has created the largest open registry of idiopathic pulmonary disease (IPF) and much of the most current patient reported data on the disease.  The information, which the community shares openly, is providing new clues about the condition and what it is like to live with the disease.  This condition affects over 100,000 individuals in the United States.
One cutting-edge start- up company, Pulse Infoframe Inc. has developed a proprietary cloud-based modular software platform that enables the development of many disease registries, including the world’s largest Global Melanoma Research Network.  GMRN founded in 2010 has over 3,000 patients in key cancer centers throughout the world.  The data from the GMRN patients includes 225 data fields as well as biomarker and genomic information that contributes to numerous research studies and papers and that continue to advance the search for a cure for Melanoma.
A promising area for further development and implementation of computerized disease registries is in the context of health information exchange (HIE) and Regional Health Information Organizations (RHIOS). While still in a nascent phase, organizations involved in an HIE can use a computerized disease registry to effectively identify and manage patients with a particular condition across a region. These systems can usually allow for data extraction from multiple sources, transformation of the data into a common format, and loading of the data into the registry. In general, they also have the expertise to support interfacing from different providers’ health IT systems.
While only a few RHIOs and other HIE organizations currently have computerized disease registries, their use has the potential to support population health-based care across various providers locally and/or regionally and provide an opportunity to better manage many chronic diseases in a larger population. The Agency for Healthcare Research Quality has made a significant investment in projects that are evaluating the impact of computerized disease registries. Three of these projects are:
Santa Cruz County Diabetes Registry which expands an established Web-based, interactive Diabetes Mellitus Registry that provides patient histories and needed tests at the point of care among public, private, and not-for-profit health care providers. It also tracks the diabetes population to identify trends in key indicators of care.
Rural Virginia eHealth Collaborative : Exexamines automation of the continuity of care record for use in patient referrals, hospital admission, and hospital discharge; e-prescribing in physician practices, hospital discharge medications, and long-term care facilities with links to community pharmacies; and disease registries for managing preventive care interventions and chronic diseases.
Colorado Associated Community Health Information Exchange (CACHIE): which  uses computerized disease registries as data sources in its interoperable quality information system developed for a collaborative network of community health centers that permits real-time and synchronous quality reporting to inform patient care and quality interventions.
It is a sea change in healthcare when we incorporate patient input to make critical health treatment decisions.  Patient Reported Outcomes work and the building of registries that solicit the patient experience and provide health care professionals and researchers with first-hand information about people with certain conditions, to increase our understanding, ensures that this complete information at the point of care will shape the future care for so many individuals who deal with serious chronic conditions, as well as rare and orphan diseases.  The value of this knowledge cannot be understated and must be utilized as soon as possible.

Innovative Technologies 2017

Many innovative and exciting new technologies are emerging in healthcare, 2017.  Some are new discoveries and devices; others are maturing technologies that will impact care delivery, clinical research, medicine, patient treatment options, chronic care management, and the effective control of disease throughout the world.

The key changes that I feel will have the most impact in 2017 are:
• mHealth including Telemedicine,
• Remote Patient Monitoring
• Health Wearables
• Behavioral Health
• Robotics
• Precision Medicine

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MHQP Patient Experience Survey: Moving the Bar in the Physician/Patient Relationship

Massachusetts Health Quality Partners (MHQP) has just released the results of the only independent patient experience survey of nearly 65,000  patients and their families from more than 500 practices representing more than 4,000 physicians in the Commonwealth of Massachusetts.  This new data provides some interesting benchmarks about how patients and providers are working together collaboratively to improve overall patient care and meet the specific needs of patients on many fronts.

The purpose of the Patient Experience Survey is to ask patients to rate the quality of certain doctor-patient interactions and other aspects of care including: whether they feel their doctor knows them; how well they  communicate with their doctor and office staff; whether they have access to timely appointments and information; whether follow-up care with other doctors is well-coordinated; and whether they would recommend their doctor to a friend or family member. The survey also asks about organizational aspects of care including: access, self-management support, and interactions with office staff. MHQP’s annual survey continually expands to measure aspects of care that are important to patients and their providers.  MHQP conducted its first Patient Experience Survey in 2005.

The 2016 data reveals that while Massachusetts patients give their physicians very high ratings for communication, many also report that they and their physicians have not talked about their overall health goals or what might make it hard to meet those goals. This finding highlights a major opportunity for improving the way physicians engage with their patients about what happens between office visits.  Unlike satisfaction surveys that ask about general perceptions, MHQP’s patient experience survey asks people what actually happened when they or their children needed primary care

On the cumulative measure of how well physicians communicate with their patients, the statewide mean score for all adult practices was 93.6 out of a potential 100 points and 96.7 for pediatric practices,. However, for the measure of whether primary care providers talked with patients about their goals for health or if there were things that made it hard for them to take care of their health, the statewide mean score for all adult practices was 55.3 out of a potential 100 points and 46 for pediatric practices. (Pediatric scores are based on responses by patients’ parents or other adult caretakers.)

In Behavioral health which was added to the survey in 2014,  , with questions about whether or not primary care providers asked their patients about feeling depressed, feeling stressed, or experiencing problems with alcohol, drugs, or a mental or emotional illness, the 2016 survey’s statewide mean score for the cumulative behavioral health measure was 59.6 of a possible 100 points, up by 12.2 percent from a mean score of 53.1 two years earlier.

“We asked patients whether their doctor listened carefully, explained clearly, showed respect, and spent enough time with them during office visits, and the response was overwhelmingly positive,” MHQP’s President and CEO Barbra Rabson explained. “But what was missing for many patients, was a conversation and guidance that would help them gain better personal control over their health and wellness.”

Massachusetts Health Quality Partners (MHQP) is a nationally recognized, non-profit coalition of physicians, hospitals, health plans, purchasers, patient and public representatives, academics, and government agencies. MHQP has a well-established track record as the trusted leader in Massachusetts for objective, independent health care quality measurement and reporting. MHQP brings together multiple stakeholders, often with disparate agendas, to effectively work together to produce trusted, comparable performance measures that help drive healthcare quality improvement in Massachusetts.  The Patient Experience Survey was first conducted in 2005.