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Medical providers should make health data free to patients

Medical providers should make health data free to patients | Healthcare and Technology news | Scoop.it

Technology makes patient access to medical records easier than ever, but the cost of such data prevents many from doing so, according to Niam Yaraghi and Joshua Bleiberg, fellows at the Brookings Institution.

Access to health information is beneficial for patients, allowing them to take a bigger role in their care and enabling them to share the information with other providers, Yaraghi and Bleiberg write at Brookings' TechTank. The latter is especially important because of the lack of interoperability of electronic medical records, they add.

But while there are virtually no costs of reproducing digital records, "many states still use the same regulatory model--which is based on the number of copied pages--for paper and digital records," they write.

Through a Google Survey, the two Brookings fellows asked 120 patients how much they would be willing to pay for their records. Sixty-eight percent said they wouldn't pay a dime to have access to the information; 10 percent said they would pay between 1 cent and $9.99; and 6.4 percent would pay between $10 and $19.99.


This is an area that involves not only healthcare professionals, but those on Capitol Hill, as well. Putting health information in the hands of patients has been one of the goals of the 21st Century Cures initiative. During a panel discussion that included lawmakers and industry professionals last June, the importance of giving patients a voice in their care was a primary focus.


To improve patient access, Yaraghi and Bleiberg say patient advocacy groups should educate patients on the value of their data, which may make them more likely to want access to the information.

In addition, because the cost is almost zero to reproduce medical information through electronic health records, "state regulations should undergo a major revision and require the medical providers to let patients have their medical data for free," they conclude.

Patient advocate Regina Holliday has been one voice in the industry calling for such change.


"You want to have access to that information before there is a crisis. You don't want to build that system up in a moment of need. [Y]ou want to be able to see the long tail of care, to be able to look for patterns," she told FierceHealthIT in an interview in October.

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5 ways to improve patient engagement in hospitals

5 ways to improve patient engagement in hospitals | Healthcare and Technology news | Scoop.it

Improving patient engagement is a subject that’s being talked about in hospital boardrooms across the country. It’s become the in-fashion political buzz phrase. Certainly sounds very well and good, but what exactly does it mean?

Likely different things to different people depending on what angle they approach it — all the way from a care assistant up to the hospital CEO. In a nutshell, it’s all about allowing the patient to take center stage in their health care, and being fully informed and understanding each step of the way. It’s about education, encouraging healthy behaviors, improving health outcomes, and lowering health care costs. The ideal state is to allow the patient to feel that they are in the driving seat and full participants in their own care.


As things currently stand, most health care systems across the world are way off from this place. It’s not just the health care that’s to blame either — because the biggest part of patient engagement involves the patient stepping up to the plate themselves. And there are some very real barriers to this including education, demographics and motivation. There’s also the reality that most 90-year-old chronically unwell patients in hospital will have difficulty taking care of themselves. The issue is thus a complex one.

No one has a better understanding of where the opportunities for improvement lie than the doctors and nurses working at the coalface. We get to see all the problems up close and personal on a daily basis. I’m going to talk about how this pertains to my own specialty of hospital medicine, and where we have enormous room to engage patients better while they are in hospital. Here are 5 areas to focus on:

1. Encouraging patients to ask questions when they see their doctor every day. As simple as it sounds, this is not done nearly enough, and is a big missed opportunity to make a difference to patients’ understanding of their illness. There are a number of reasons why this doesn’t happen, ranging from a “rushed” hospital environment, to patients sometimes feeling embarrassed to ask certain questions. I’m actually surprised by some of the questions I hear when I ask my patients if they have anything they want to ask me, and there’s no way I would have guessed what they were unsure about unless I encouraged them to speak up.

2. Giving patients all the knowledge they need about their medical condition. Writing details such as blood count numbers on the whiteboard at the end of their bed is one way to do this. In the future, patients will likely be able to pull up some of their own data on computers. The more that patients know, the more empowered they will be to make important health care decisions.

3. Involvement of families. Just as important as the patient, is the family. This is true for any patient who is too unwell to speak for themselves, and particularly applies to the elderly. Doctors and nurses have to ensure that family is completely on board with the plan of care and what their role is in the recovery process. I’ve always said that if you want to make sure that something is done after discharge, tell the patient’s daughter. It’s been my observation everywhere.

4. Involving the patient fully in the discharge process. The discharge process by its’ very nature is a risky endeavor. Typically there are medications that have been changed, tests pending, or even an uncertain diagnosis. All this at a time when the patient is still very frail. It is a crucial transition point, more important than almost any other to get right.

5. Follow-up care. All hospitalized patients must follow-up in a timely manner after being discharged. Nipping a potential problem in the bud can help reduce readmissions and potentially serious complications. Reminders should be sent to the primary care physician and a post-discharge follow-up call from a nurse or administrator would not go amiss — and also shows that we care.

There is no one magic formula for solving the issue of patient engagement in hospital medicine. It will require a multifaceted and multidisciplinary approach. Whichever arena we are in, it is vital for a number of reasons. Whether we are talking about raising the quality of health care, improving outcomes, or lowering health care costs — there’s a great deal to play for. The more knowledge and opportunities to participate in their own health care, the better it is for both patients and doctors.


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Study: Nearly half of patients would withhold data from providers

Study: Nearly half of patients would withhold data from providers | Healthcare and Technology news | Scoop.it

Nearly half of patients participating in a trial looking at patient control of the medical records withheld clinically sensitive information from some or all of their care team.

The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health (formerly Wishard Health Services) conducted the six-month trial involving 105 patients at a primary care clinic. Patients were allowed to designate who could see their records, including information on sexually transmitted diseases, substance abuse or mental health.

Patients were able to hide some or all of their data from some or all providers--and 49 percent of them did. However, healthcare providers were able to view the hidden data, if they felt the patient's healthcare required it, by hitting a "break the glass" button on their computer screens, according to an announcement.

While patients strongly favored control over their records, providers had mixed reactions. In the trial, 54 percent of providers said patients should be able to control who can see their electronic health record data; 58 percent said restricting providers' access could be harmful to the patient-physician relationship; and 71 percent said withholding data in the EHR would have a negative impact on the quality of care.

The five research papers from the trial, including a point-counterpoint, make up the January 2015 supplement to the Journal of General Internal Medicine.

The growing ability to collect different data sets on patients has been both a curse and a blessing for the industry.

Since recommending that social and behavioral data be included in EHRs, the Institute of Medicine has a committee working out exactly which pieces of information it considers most relevant to health. It has winnowed its recommendations down to 11, including educational attainment, financial resource strain, stress, depression, physical activity, social isolation, and intimate partner violence.

However, a provider's use of an electronic health record can cause a patient to clam up for fear that the data won't be secure, according to a study in the Journal of the American Medical Informatics Association (JAMIA).

In addition, data segmentation poses a problem in EHRs, with teen privacy a particular challenge. Providers, however, worry that without segmentation capabilities, patients will be reluctant to divulge facts about themselves that could have a vital bearing on their care.



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Patient Portals: The Good, The Bad and The Ugly -

Patient Portals: The Good, The Bad and The Ugly - | Healthcare and Technology news | Scoop.it

I experienced the “pain” of accessing and managing multiple provider portal sites firsthand following an injury and subsequent surgery earlier this year. In the months following my hospitalization, I walked away with paperwork and access codes to five different patient portal sites, including my PCP, surgeon, the initial hospital where I received emergency treatment, the hospital where I had surgery, and in addition (not related to my injury) my OB/Gyn, and recently, my dentist! Despite my healthcare IT background, it was a daunting task to sign up for each site and as you can imagine the lack of linkage leads to a very fragmented view of my patient data.

But, the fragmented view is only the beginning of the problem with multiple portals. There are multiple log-ins and each portal has different requirements for my user ID and password. One site advertises that they are a “Healthkey” member, and if your providers are all members then you can link user IDs and passwords, resulting in one user ID and password for all sites. In my case, only one out of the five portals offered this feature. Another portal offered the use of Facebook, Google, LiveID, and Yahoo as a log-in, with the disclaimer that the only advertised “secure” site was the vendors’ login.

Another difficulty is that each portal looks and feels different. Each portal offers its own navigation, verbiage and menus. A “roadmap” for each would be helpful or maybe it would add to the confusion. Perhaps most alarming is that each portal contained different “pictures” of my healthcare information, including conflicting medication lists. None of the current medication lists were accurate. Some had missing active medications, some listed medications that I no longer take, some contained the wrong dosage, while others listed no medications at all.

Only one portal (my PCP’s portal) was close to containing an accurate medical history, and even that was incomplete. Only three out of five portals contained lab test results, just one had a complete list, and two contained imaging results.

How do we make the patient portal experience better? A few thoughts:

  • Offer additional ways to consolidate and standardize patient user IDs and passwords
  • Create and follow a standard model for menus and navigation
  • Develop a single repository for access to all data or optimize sharing of patient healthcare data between systems
  • Standardize accuracy requirements for entry of healthcare data to provide a consistent, accurate view for all patients

Some organizations are moving toward standardization. One vendor has developed a “shared” patient portal and while the concept is on track, there is still the option to customize the look and feel based on organizational build decisions. The result is a fragmented record that almost looks the same. Both of the hospitals I was treated at use the “same” EHR, but each EHR utilizes their organization’s version. In order for healthcare organizations and providers to meet Meaningful Use (MU) requirements for patient access to their electronic healthcare records, and communication with their patients, they will need to simplify the process overall. Personally, I was ready to pitch all of the information on these portals when I realized how much of my time would be involved, measured in hours, not minutes. And that’s not counting the time I could spend logging into each portal to update (and correct) my personal healthcare information. The typical patient will not have the patience, and quite possibly the ability to handle management of multiple sites and all that goes with them. And while we have come a long way, there’s still much work to do in simplifying patient portals.



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Three Ways Doctors Can Use Patient Data to Get Better Results | The Health Care Blog

Three Ways Doctors Can Use Patient Data to Get Better Results | The Health Care Blog | Healthcare and Technology news | Scoop.it

Physicians have always been in the information business. We have kept records of patient data regarding the vital signs, allergies, illnesses, injuries, medications, and treatments for the patients we serve. We seek knowledge from other physicians, whether that knowledge comes from the conclusions of experts from research published in a medical journal or the specialist down the hall. However, a physician will always benefit from additional good information such as the analysis of pooled data from our peers treating similar patients or from the patients themselves.

Over the next few years, vast new pools of data regarding the physiologic status, behaviors, environment, and genomes of patients will create amazing new possibilities for both patients and care providers. Data will change our understanding of health and disease and provide a rich new resource to improve clinical care and maximize patient health and well-being.

Patient Data Used by the Patient

Instead of a periodic handful of test results and a smattering of annual measurements in a paper chart, healthdata will increasingly be something that is generated passively, day by day, as a byproduct of living our lives and providing care. Much of the data will be generated, shared, and used outside of the health system. It will belong to patients who will use it to manage their lives and help them select physicians and other healthcare professionals to guide them in their quest for a long and healthy life.

Based on a patient’s preferences and needs, the data will flow to those who can best assist them in maintaining their health. It will reveal important and illuminating patterns that were not previously apparent, and with the right system in place, it will trigger awareness and alerts for patients and other providers that will guide behaviors and decisions.


The future will mandate that healthcare systems have sophisticated analytical infrastructures in place to collect, analyze, and display these vast streams of data in ways that assist physicians and other care providers in delivering optimal care. Healthcare has always been dependent on managing information and knowledge to achieve the best possible outcomes, but this will become increasingly truer over the next decade.

Three Aspects of the Data-Driven Healthcare Transformation

This data-driven transformation will likely play out in at least three important ways.

1. Efficient and Effective Operations: Reduce Wasteful Spending

First, health systems will have to use data to run their operations more efficiently and effectively. Data can help healthcare providers better understand their operations. It can spotlight where they are wasting time, energy, and money. If an organization effectively uses information, it can optimize the use of resources, run more efficiently, and maximize reimbursement—all prerequisites for survival in the years ahead. While it sounds simple, this process alone promises to yield major efficiency gains and cost savings for organizations and for the nation. Experts have estimated that between 30 and 50 percent of healthcare expenditures in the United States are waste. Thus, this step alone represents a potential trillion-dollar opportunity to free precious resources for more productive use.

2. Manage Population Health
Second, data can help healthcare providers optimally manage population health. Data can be used to design more effective clinical processes that improve the diagnosis and treatment of the ill and injured. It can help physicians and other care providers understand how to standardize on evidence-based care processes. Standardization on a best practice represents significant additional opportunities to save costs and improve the quality and safety of care. Coupled with a physician’s knowledge and experience, data can augment a clinician’s ability to provide the best possible care.

3. New Technology-enabled Care and Personalized Medicine

Finally, new technology-enabled care delivery models will help healthcare providers deliver care that is more continuous, proactive, and geographically dispersed. Facilitated by the revolution in sensors, these care models will provide vast streams of data and turn society into an enormous learning laboratory. These sensors will provide information about what we do, how we eat, and when we exercise. They will provide information concerning our behaviors and our environments. In short, these new technologies will provide information regarding how we live in the real world and how our activities and environment impact health, disease, and treatments.

With the support of modern digital sensors, former trickles of information will turn into torrents creating vast pools of information that can provide new knowledge. In combination with genomic medicine, this new information will allow care providers to determine the right diet, medications, and therapies for each individual based on their specific situation, thereby delivering care that is far more personalized. And this type of personalized care will be empowering for patients and families, enabling them to participate in their healthmanagement in far more meaningful ways. The opportunities to improve population health are massive. Yes, there are significant issues regarding data security and privacy that must be addressed, but in time, they will be solved.

The Impact of New Data on Healthcare Costs

The impact of these trends on healthcare will be immense, to the point that it becomes hard to predict the ultimate impact on national healthcare expenditures. For years, healthcare policymakers and economists have been projecting massive increases in healthcare spending with each passing year. They correctly point out that this inexorable rise in healthcare costs poses an unacceptable risk to our economy.

While this is certainly of concern, the ultimate impact of aggressive waste elimination, process standardization, and new, more efficient, outpatient-centric care models is hard to quantify, yet it will likely be substantial. These powerful forces promise to drive healthcare expenditures down. As healthcare experiences the exponential impact of technological change, it is likely we will face a far different healthcare world a few years from now. Recall that not long ago we all relied on the thick Yellow Pages left on our doorsteps. Little did we know what impact a small company called Google would have on our lives.

Sooner or later, the same forces that have transformed other industries will fundamentally change healthcare. This will result in entirely new care environments and dynamics. This new world will most definitely revolve around data.Physicians have always been in the information business. We have kept records of patient data regarding the vital signs, allergies, illnesses, injuries, medications, and treatments for the patients we serve. We seek knowledge from other physicians, whether that knowledge comes from the conclusions of experts from research published in a medical journal or the specialist down the hall. However, a physician will always benefit from additional good information such as the analysis of pooled data from our peers treating similar patients or from the patients themselves.

Over the next few years, vast new pools of data regarding the physiologic status, behaviors, environment, and genomes of patients will create amazing new possibilities for both patients and care providers. Data will change our understanding of health and disease and provide a rich new resource to improve clinical care and maximize patient health and well-being.

Patient Data Used by the Patient

Instead of a periodic handful of test results and a smattering of annual measurements in a paper chart, healthdata will increasingly be something that is generated passively, day by day, as a byproduct of living our lives and providing care. Much of the data will be generated, shared, and used outside of the health system. It will belong to patients who will use it to manage their lives and help them select physicians and other healthcare professionals to guide them in their quest for a long and healthy life.

Based on a patient’s preferences and needs, the data will flow to those who can best assist them in maintaining their health. It will reveal important and illuminating patterns that were not previously apparent, and with the right system in place, it will trigger awareness and alerts for patients and other providers that will guide behaviors and decisions.


The future will mandate that healthcare systems have sophisticated analytical infrastructures in place to collect, analyze, and display these vast streams of data in ways that assist physicians and other care providers in delivering optimal care. Healthcare has always been dependent on managing information and knowledge to achieve the best possible outcomes, but this will become increasingly truer over the next decade.

Three Aspects of the Data-Driven Healthcare Transformation

This data-driven transformation will likely play out in at least three important ways.

1. Efficient and Effective Operations: Reduce Wasteful Spending

First, health systems will have to use data to run their operations more efficiently and effectively. Data can help healthcare providers better understand their operations. It can spotlight where they are wasting time, energy, and money. If an organization effectively uses information, it can optimize the use of resources, run more efficiently, and maximize reimbursement—all prerequisites for survival in the years ahead. While it sounds simple, this process alone promises to yield major efficiency gains and cost savings for organizations and for the nation. Experts have estimated that between 30 and 50 percent of healthcare expenditures in the United States are waste. Thus, this step alone represents a potential trillion-dollar opportunity to free precious resources for more productive use.

2. Manage Population Health
Second, data can help healthcare providers optimally manage population health. Data can be used to design more effective clinical processes that improve the diagnosis and treatment of the ill and injured. It can help physicians and other care providers understand how to standardize on evidence-based care processes. Standardization on a best practice represents significant additional opportunities to save costs and improve the quality and safety of care. Coupled with a physician’s knowledge and experience, data can augment a clinician’s ability to provide the best possible care.

3. New Technology-enabled Care and Personalized Medicine

Finally, new technology-enabled care delivery models will help healthcare providers deliver care that is more continuous, proactive, and geographically dispersed. Facilitated by the revolution in sensors, these care models will provide vast streams of data and turn society into an enormous learning laboratory. These sensors will provide information about what we do, how we eat, and when we exercise. They will provide information concerning our behaviors and our environments. In short, these new technologies will provide information regarding how we live in the real world and how our activities and environment impact health, disease, and treatments.

With the support of modern digital sensors, former trickles of information will turn into torrents creating vast pools of information that can provide new knowledge. In combination with genomic medicine, this new information will allow care providers to determine the right diet, medications, and therapies for each individual based on their specific situation, thereby delivering care that is far more personalized. And this type of personalized care will be empowering for patients and families, enabling them to participate in their healthmanagement in far more meaningful ways. The opportunities to improve population health are massive. Yes, there are significant issues regarding data security and privacy that must be addressed, but in time, they will be solved.

The Impact of New Data on Healthcare Costs

The impact of these trends on healthcare will be immense, to the point that it becomes hard to predict the ultimate impact on national healthcare expenditures. For years, healthcare policymakers and economists have been projecting massive increases in healthcare spending with each passing year. They correctly point out that this inexorable rise in healthcare costs poses an unacceptable risk to our economy.

While this is certainly of concern, the ultimate impact of aggressive waste elimination, process standardization, and new, more efficient, outpatient-centric care models is hard to quantify, yet it will likely be substantial. These powerful forces promise to drive healthcare expenditures down. As healthcare experiences the exponential impact of technological change, it is likely we will face a far different healthcare world a few years from now. Recall that not long ago we all relied on the thick Yellow Pages left on our doorsteps. Little did we know what impact a small company called Google would have on our lives.

Sooner or later, the same forces that have transformed other industries will fundamentally change healthcare. This will result in entirely new care environments and dynamics. This new world will most definitely revolve around data.



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Patient Engagement May Reduce Healthcare Reform Anxiety | EHRintelligence.com

Patient Engagement May Reduce Healthcare Reform Anxiety | EHRintelligence.com | Healthcare and Technology news | Scoop.it
How can greater adoption of patient engagement tools help to alleviate uncertainty about the future of healthcare reform?

Adopting more robust patient engagement technologies may help providers and patients alike find their way out of pervasive anxieties about the future of the healthcare industry – if physicians can lead the way.  According to a survey performed by Booz Allen Hamilton and Ipsos Public Affairs, few industry stakeholders are satisfied with the way healthcare is headed, but believe that preventative care, backed by patient engagement technologies, mobile apps, and care coordination, may help them find the way forward through a complicated maze of financial and administrative changes.

“Physicians, especially the older ones and the specialists, have to move into a whole new world, and they are concerned that it’s making their life a lot more complicated than it used to be,” said Nicolas Boyon, Senior Vice President at Ipsos Public Affairs, in an interview with HealthITAnalytics.  “It is partly generational.  The average age of practicing physicians in the US is actually slightly over 50, and specialists tend to be even older.  A lot of physicians started practicing when the world was very different.  They view their role, first and foremost, as caring for patients, and technology was not necessarily what they specialized in or learned a lot about in medical school.”

“It’s curious to see the level of anxiety out there,” added Grant McLaughlin, Vice President at Booz Allen.  “When you look at behavior change, anxiety is often lessened when there is a path.  We’re in a time of uncertainty as Affordable Care Act is being rolled out and new care models are being tested.  We may not necessarily have an endpoint clearly in view, and I think that causes anxiety.”

While physicians do not generally believe that current mobile apps and other patient engagement products are up to the challenge of providing valuable and medically sound information and tools to the patient population, there is a widespread interest in such technologies among consumers.  Patients are seeking a higher degree of convenience, more control over their own health, and more efficient ways to stay connected with their providers, conduct administrative tasks, and review their own health data, the survey revealed.

“Once you actually find an app that you can use, and you use it every day to help you do something, and you find the value in it, then it has become invaluable to you.  You absolutely cannot live without it,” McLaughlin said.  “That’s what we’re struggling with.  We’re seeing lots of technological inventions, but how do we add value in the context between the consumer and the provider?  If we can get to the crux of how to make the conversation between consumers and providers more valuable, and if technology can enable that, then I think we’ve struck gold.”

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When the doctor’s away, the patient is more likely to survive

When the doctor’s away, the patient is more likely to survive | Healthcare and Technology news | Scoop.it

"Don't get sick on a weekend." That advice is also part of a title of a research paper that evaluates the fates of patients who go through the emergency room on a weekend. These patients are more likely to die. It's just one of a number of studies that suggests patients who enter the hospital while the staffing is lower or the staff more relaxed end up with worse results.

But the precise cause of this enhanced weekend mortality has been hard to determine; is it the reduced staff, a more leisurely approach to care, or some other factor? To try to get at the cause, some researchers obtained records of heart patients who had a critical event during a time when hospitals were at full staff, but heart specialists were likely to be out of town. Unexpectedly, they found that the patients did significantly better when the relevant specialists were unavailable.

The study relied on medicare records to track patients that were admitted to a hospital with a serious heart condition: acute myocardial infarction, heart failure, or cardiac arrest. The key measure was simply whether the patient was still alive 30 days later.

That may sound simple, but the rest of the analysis was remarkably sophisticated. To figure out when heart specialists were most likely to be present at hospitals, they selected two large cardiology meetings: the American Heart Association and the American College of Cardiology, both of which attract over 10,000 participants. Patients admitted during the meetings were compared with groups admitted three weeks before and after. Reasoning that researchers are more likely to attend these meetings, they analyzed teaching hospitals separately from regular ones.

As additional controls, they checked a number of additional meetings for oncology, gastroenterology, and orthopedics specialists. They also looked at the impacts of additional critical injuries, like gastrointestinal bleeding and hip fractures, as well as non-critical cardiac problems.

In total, there were tens of thousands of patients involved. And the trends were clear. At teaching hospitals, the rate of death after heart failure was 24.8 percent on non-meeting days. While the cardiologists were out of town, it dropped to 17 percent. A similar trend was apparent with cardiac arrests, where death rates fell from 68.6 percent to 59 percent while cardiology meetings were happening. There was no significant difference with acute myocardial infarction patients.

So, having specialists in town appeared to make matters worse for patients—the exact opposite of the hypothesis the researchers set out to examine. The various controls suggested the effect was robust, and it persisted after adjusting for other potential influences, like age and sex.

In a press release accompanying the report, one of its authors, Anupam Jena, said "That's a tremendous reduction in mortality, better than most of the medical interventions that exist to treat these conditions." What could possibly be causing it? The authors consider three possibilities. First, there's something involved with the changes in cardiology staffing that occur when specialists go out of town that actually increases care. The second is that there are fewer people having outpatient or same-day procedures, given that doctors wouldn't schedule these when they knew they'd be absent. This would allow the remaining physicians to better focus care on the serious cases.

The final possibility that they consider is that the doctors that remain behind are more cautious about the care they give, avoiding aggressive procedures such as the use of angioplasty or stents to re-open clogged heart vessels. This would be consistent with the lack of effect in acute myocardial infarction patients, where this procedure is used less often.

Although their analysis can't distinguish among these possibilities, it's clear that this effect warrants further attention. Both because it's possible that the long-term survival evens out thanks to more aggressive treatment, and because we might find out that we've been acting a bit too aggressively.


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When the patient’s touch alters the doctor

When the patient’s touch alters the doctor | Healthcare and Technology news | Scoop.it

I do not know about you, but I get confused about the Heisenberg uncertainty principle.  Asked for a definition, I usually say something about how when you try to measure something, you change it, therefore one can never be complete or exact in measurement.  However, that is wrong. The uncertainty principle has nothing to do with the effects of measurement, but rather its limits.  If you measure one thing, such as the speed of a car, you cannot at the same time, accurately, determine the location of the car, simply because it is moving.


When we say that measuring an object or event changes it, we are talking about the “observer effect.”   I cannot taste a cake, without removing a few crumbs.  Cannot measure the temperature of an oven, without stealing a bit of heat.  Cannot measure the pressure in a tire, without venting a sample of air.  Must lift a stone to weigh it.

In health care, examples of the observer effect are ubiquitous; they define the practice of medicine.  We take blood to measure anemia.  Cut tissue to render a biopsy.  Radiate to do a CT scan.  Raise blood pressure by squeezing the upper arm, as we take a reading.  Demand psychiatric introspection as we try to understand emotional crisis.  Use toxic drugs to make possible curative therapy.

Patients expect to be altered, even as they are observed.  It is part of the sick role, to consent to be changed, damaged, as we yearn to be repaired.  We call these changes “side effects,” “complications” or just the cost of treatment.  We allow our hearts to be broken, so we may heal.  The frailty, interconnectivity and sensitivity of our body’s means that care is intrusive, disruptive and altering.   If we do not allow such invasion, which becomes more destructive as the illness becomes more threatening, then testing, diagnosis and treatment would be impossible.

It occurs to me that in the practice of medicine, it is not just the patient being observed, measured, and tested and, therefore, it is not only the patient being changed.  Just as the doctor’s touch alters the patient, so the patient’s touch alters the doctor.   While this may not be the stated goal of the interaction, it is definitely its effect.  With each patient, each day, and throughout a career, a physician is molded.  His or her heart is figuratively broken, and as they heal, they are never the same.

Last Wednesday was a “bad” day in the office.  Carmen was devastated to learn that her PET/CT scan showed new cancer growth.  Long-time patient Allen changed doctors, because he did not think I understood his needs.  Nick had an anaphylactic reaction to a new chemo drug.  Ester was found to be getting narcotic prescriptions from other doctors, and probably selling them.  A physician friend of mine was sued. Tom died.

Last Thursday was a “good” day in the office.  Chris started multidrug therapy and, despite the six-hour infusion, had no side effects.  Lung cancer survivor Joan and I laughed for 10 minutes, looking at video of her grandson.  Steve’s biopsy was benign.  Paula’s out-of-control liver test, turned out to be a lab error.  Stella celebrated 10 years cancer free.  An exciting breast cancer study was published.  Nina’s first restaging CT scan shows a complete remission.

Doctors change with days like these.  When you hold a patient in your arms after telling them they will soon die, or hug close the infant child of a cured leukemia patient, you are altered, corrupted, modified, as if you inhaled the air of a frozen winter day or watched sunrise burst on an azure sea.

If a physician is lucky, if they have good supports, if they are blessed with a holistic view of the world, then the experience, the lessons, will make them better at the practice of medicine and happier in life.  Allowing, in fact yearning for change, which is the complement of the sick role, will build in the doctor the skill to be a true artist who can sense the physical and emotional needs of patients.  They are molded into healers more than any text or professional mentor could offer.

If a physician is unlucky, has weak supports, and has invasive and destructive experiences, which come at the wrong times, they may become bitter, burned out, angry and isolated.  Good days will be brutal.  The side effects of the practice of medicine will injure them, so that they cannot go on.

Heisenberg, of course, was talking about quantum mechanics, the movement of sub-microscopic particles through space, randomly slamming in to one another and changing with time.  Perhaps, that is all we truly are.  Tiny beings in an infinite universe, randomly running in to each other and, with each bump, each moment, the wonder of each experience, changing over time.  Where ever we meet, whenever we touch, even if it is just a few minutes in an emergency room, a hospital ward or a clinic, we are both altered, forever.



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Patients want more from their EHRs | Healthcare IT News

Patients want more from their EHRs | Healthcare IT News | Healthcare and Technology news | Scoop.it

Having established a level of trust and familiarity with electronic health records over the past few years, increasing numbers of U.S. patients are looking for more advanced features from their EHRs, according to a new survey from the National Partnership for Women & Families.


The study, "Engaging Patients and Families: How Consumers Value and Use Health IT," follows up on a similar 2011 report that assessed consumer views toward EHRs. A lot has changed since then, with more and more patients comfortable with the idea of digitized records, and easier online access to health information spurring more patient engagement in their care.

In the past year, more than four in five patients with online access to their health records (86 percent) used their online records at least once, according to NPWF; more than half (55 percent) used them three or more times a year.


"To date, the public discourse on health IT has largely focused on the views of doctors, hospitals and vendors," said NPWF President Debra L. Ness in a press statement. "It is crucial to hear what patients have to say about how they experience EHRs and health IT as they receive care and manage their health."

By repeating questions from 2011, the new survey – which lays out seven strategies to help engage patients and families more effectively in their care – identifies trends in patient attitudes since meaningful use has helped fuel EHR adoption. Its new questions yield data on new topics in discussion for health IT policies and programs, such as patient-generated health data, patient care plans and mobile access.


"Engaging Patients and Families" is not the only new report being updated for the first time since 2011: It comes close on the heels of the Office of the National Coordinator for Health Information Technology's new 2015 Strategic Plan, which was published on Monday for the first time in four years.

"As the National Partnership's new data show, more consumers are accessing, sharing and using their health information, underlining the importance of interoperability of health data and systems," said National Coordinator for Health IT Karen DeSalvo, MD, in a statement. "We are focusing our efforts in these areas to empower individuals to address not only gaps in information exchange and interoperability, but also enable them to take steps to improve their health and better manage their health needs,"

Among other key points from NPWF's report, which polled more than 2,000 patients: Patients' online access to their health records has nearly doubled – from 26 percent in 2011 to 50 percent in 2014.

Still, they want even more functionality, including the ability to email providers (56 percent), review treatment plans (56 percent), see doctors' notes (58 percent) and test results (75 percent), schedule appointments (64 percent); and submit medication refill requests (59 percent).

Patients' trust in the privacy and security of EHRs has increased since 2011, and patients with online access to their health information have a much higher level of trust in their doctor and medical staff (77 percent) than those with EHRs that don't include online access (67 percent).

Different populations prefer and use different health IT functionalities. Hispanic adults were significantly more likely than non-Hispanic Whites (78 percent vs. 55 percent) to say having online access to their EHRs increases their desire to do something about their health. African American adults were among the most likely to say EHRs are helpful in finding and correcting medical errors and keeping up with medications.

NPWF suggests that "specialized strategies" may be necessary to improve health outcomes and reduce disparities in underserved populations.

"The views of patients must be front and center as we take the next steps in implementing health IT," said Sandra R. Hernández, president and CEO of the California HealthCare Foundation, which funded the poll. "As we as a nation become more diverse, the imperative to address disparities grows. We need the kind of robust information EHRs provide and the genuine patient engagement they can facilitate."

"We have made progress in leaps and bounds in just a few short years," said Mark Savage, NPWF's director of health information technology policy and programs, in a statement. "But clearly there are barriers still to overcome, and this report breaks down policy implications for the meaningful use program as well as broader delivery system initiatives that must be carried out. And it's an important reminder that meeting the needs of patients and families must always be at the core of health IT design and implementation."



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Rob Benson's curator insight, December 15, 2014 9:03 AM

Are we moving beyond Meaningful Use to something that means something useful?

Scoop.it!

Mobile patient engagement startup Gamgee raises $4M

Mobile patient engagement startup Gamgee raises $4M | Healthcare and Technology news | Scoop.it
Silicon Valley startup Gamgee, a mobile health developer that seeks to improve patient engagement with voice-enabled technology, raised $4 million, according to a filing with the SEC.

The San Mateo-based company, founded in 2013 by CEO Robert Quinn, is betting it can provide more instruction for patients with the voice technology versus just an application. It’s 22otters app is delivered by way of text and voice calls, which deliver content from a cloud-based platform that is customizable for specific providers,

“Our platform and process suck in patient handouts and convert them into effective, spoken dialogues on mobile devices,” the company says on a description on AngelList. “We’re focused initially on procedure prep rather than the crowded down-stream use cases, and we are heavily invested in voice interaction.”

The startup is also backed by Khosla Ventures, and Vinod Khosla is listed on the From D filing as director for Gamgee.

Gamgee does not have a website and Khosla Ventures, which backs a number of well-known Silicon Valley startups, does not list Gamgee in its portfolio. That likely means the line of equity and debt offering were personal investments.
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