MS 'brain fog' lifted after stem cell treatment

MS 'brain fog' lifted after stem cell treatment

BBC journalist Caroline Wyatt has spoken of how the "brain fog began to lift" after she had pioneering treatment for multiple sclerosis (MS).

The former BBC defence correspondent was deemed unsuitable for an NHS trial and paid $60,000 (£48,000) for a stem cell transplant in Mexico in January.

Both the FDA and the NHS criteria for suitability for clinical trials are complex and often eliminate patients who have had prior treatments which could confound and yield inaccurate results from a clinical trial.  This screening requirement eliminates large numbers of candiate volunteers from the study.   The criteria are derived from collaboration of principal investigators and the FDA.

Many patients seek out prospective treatments in other countries who have less stringent requirements for receiving new (ie, experimental treatments)

Caroline Wyatt is one of those patients.

Multiple sclerosis

In MS the protective layer surrounding nerve fibres in the brain and spinal cord - known as myelin - becomes damaged. The immune system mistakenly attacks the myelin, causing scarring or sclerosis.

The damaged myelin disrupts the nerve signals - rather like the short circuit caused by a frayed electrical cable.

If the process of inflammation and scarring is not treated then eventually the condition can cause permanent neurodegeneration.

'Aggressive treatment'

She changed jobs but, following a relapse in 2001, she was given a brain scan and told she might have MS - a diagnosis that was confirmed following more invasive tests such as a spinal tap in 2015.  Wyatt initially tried various drug treatments but as her condition began to deteriorate she began to investigate the stem cell treatment.  "I got in touch with Sheffield who were the British arm of a trial... and they very kindly agreed to see me," she said.

"They did various tests but decided in the end that medically speaking I was not one of the best candidates so they couldn't do it here."

Wyatt said that although UK bodies such as the NHS and watchdog NICE describe the treatment as experimental, about 80% of people who had the treatment responded to some degree and more than 50% saw the progression of their MS halted.

Fake News ! It happens all the time in Medicine and HealthCare

Fake news seems to be the new mantra in many quarters.  Fake news can be actively pursued, or passively enjoyed by incomplete, inaccurate, or absent reporting.


Maintenance of Competence (MOC) is an item that few patients are aware.  Specialty boards require re-examination after initial board certification to maintain board certification.

Proponents claim that the Maintenance of Certification program was designed to help physicians keep abreast of advances in their fields, develop better practice systems, and demonstrate a commitment to lifelong learning.

Whether or not the MOC program accomplishes any of these stated goals is a matter of intense debate.

Opponents claim that the Maintenance of Certification program is overly burdensome in both time and expense, reducing time available to spend with both family and patients. The exams have had little relevance to the individual physician's practice requiring tremendous effort to relearn material not useful to daily practice, only useful for passing the board exam. There is no proof that it improves patient care and little to no supporting data except for controversial articles written by board members. Serious questions have been raised regarding Member Board finances.^[2]

Pennsylvania Medical Society PowerPoint by Wesby Fisher, M.D.

The AMA calls for an immediate end to MOC

RESOLVED, That our American Medical Association call for the immediate end of any mandatory, secured recertifying examination by the American Board of Medical Specialties (ABMS) or other certifying organizations as part of the recertification process for all those specialties that still require a secure, high-stakes recertification examination.

Dr Fisher explains how this came to be, and how the American Board of Medical Specialties, the AMA and other physician organizations have engaged in an alleged policy of corruption and profiteering from their own colleagues.

Continuing medical education has served well for many decades as AMA approved courses which functioned adequately to ensure professionalism and currency in medical knowledge.l These courses also are charged for by specialty societies and the AMA.

MOC seems superfluous.   State licensing authorities already require continuing medical education for each licensing period. Physicians are being doubly extorted for the 'right and privilege to earn income.

This who establish these rules are not practicing physicians. 

Patient Safety Awareness Week United for Patient Safety Campaign

During the past ten years an effort to focus on patient safety has yielded significant gains for patient safety.  The week of March 12-18 will bring attention to providers and patients alike.  Safety is a never ending goal in day to day hospital and/or clinic operations.  When procedures become routine and repetitive studies have shown human error intrudes with short cuts or inattention to detail.

The National Patient Safety Foundation

The National Patient Safety Foundation’s vision is to create a world where patients and those who care for them are free from harm. A central voice for patient safety since 1997, NPSF partners with patients and families, the health care community, and key stakeholders to advance patient safety and health care workforce safety and disseminate strategies to prevent harm. NPSF is an independent, not-for-profit 501(c)(3) organization. 

NPSF Vision Statement

Creating a world where patients and those who care for them are free from harm.

NPSF Mission 

NPSF partners with patients and families, the health care community, and key stakeholders to advance patient safety and health care workforce safety and disseminate strategies to prevent harm.

 Improving Patient Safety in Hospitals: A Resource Listfor Users of the AHRQ Hospital Survey on PatientSafety Culture

The Agency for Healthcare Research and Quality (AHRQ) has a resource document which elaborates on many safety issues for hospitals.  It is updated annually.

The AHRQ has programs defining specific areas to be analyzed with recomendations for improvement.  It is available on their website (Quality and Patient Safety Index)

United for Patient Safety Campaign

Doc Vader Goes "Blind Melon" on Patient Demands

Looking for a hospital on WebMD or HealthGrades is NOT like finding a hotel on TRIIPADVISOR. Watch my friend, Doc Vader.











Credits go to: Zdogg MD .   Out!

High-Volume Prescribers and Medicare Prescriptions of Opioids | Substance Use and Addictive Disorders | JAMA Internal Medicine | The JAMA Network

Who prescribes the most opiods?  Several surprises from this study from the Journal of the American Medical Association

Distribution of Opioids by Different Types of Medicare Prescribers

Jonathan H. Chen, MD, PhD^1,2; Keith Humphreys, PhD^1,2,3; Nigam H. Shah, MBBS, PhD⁴; et alAnna Lembke, MD³

Author Affiliations Article Information

JAMA Intern Med. 2016;176(2):259-261. doi:10.1001/jamainternmed.2015.6662

Researchers have suggested that the opioid overdose epidemic¹ is primarily driven by small groups of prolific prescribers and “corrupt pill mills.”^2,3 For example, the California Workers’ Compensation Institute found that 1% of prescribers accounted for one-third of schedule II opioid prescriptions and 10% accounted for 80% of prescriptions.⁴ This propagates a message that opioid overprescribing is a problem of a small group of high-volume prescribers, while general use is likely safe and effective. Medicare data provide the opportunity to address the question of whether such prescribing patterns occur across a national population.

Opioid prescriptions are concentrated in specialty services in pain, anesthesia, and physical medicine and rehabilitation. By sheer volume however, total prescriptions are dominated by general practitioners (family practice, internal medicine, nurse practitioners, and physician assistants).

Contrary to the California Worker’s Compensation data showing a small subset of prescribers accounting for a disproportionately large percentage of opioid prescribing, Medicare opioid prescribing is distributed across many prescribers and is, if anything, less skewed than all drug prescribing. The trends hold up across state lines, with negligible geographic variability. Figure 2 does show greater skewing for total drug costs of Medicare opioid claims, with 78% accounted for by 10% of prescribers. This could be selection of more expensive formulations or higher doses prescribed.

The distribution of any social phenomena has some degree of skewing similar to an “80/20 rule” (eg, 20% of the population controls 80% of the wealth).⁶ As of 2013, however, these data argue that opioid prescribing is no more skewed than other prescribing, reflecting a widespread practice relatively indifferent to individual physicians, specialty or region. High-volume prescribers are not alone responsible for the high national volume of opioid prescriptions. Efforts to curtail national opioid overprescribing must address a broad swath of prescribers to be effective.

MEDICINE CABINET MINEFIELD, HOW OLD PRESCRIPTIONS FUEL THE OPIOID CRISIS

Medicine Cabinet Minefield: How old prescriptions dare fueling an opioid addiction cr

High-Volume Prescribers and Medicare Prescriptions of Opioids | Substance Use and Addictive Disorders | JAMA Internal Medicine | The JAMA Network

Nudging our kids and families towards better eating

Trump Pick for CMS Would Ease Up on Physicians

Seema Verma, MPH, President Donald Trump's choice to head the Centers for Medicare & Medicaid Services (CMS), has mixed feelings about electronic health record (EHR) systems.

It's just one example of how she's on the same page with many physicians regarding healthcare.

"My doctor…is staring at her computer instead of looking at me," the healthcare policy consultant told the US Senate Committee on Finance during her confirmation hearing yesterday.

Seema Verma, CMS administrator nominee for President Trump, smiles during a Senate Finance Committee hearingWashington, DC, on Thursday, February 16, 2017. Source: Pete Marovich/Bloomberg/Getty Images

This is just one example of how provider's recommendations have been purposefully neglected in regard to electronic health records.  The energy of a vast HIT niche have been misappropriated by HHS and CMS in an undisguised effort to harness EHRs for their own interest to collect data.  Little if any effort has been made to the entology of the EHR, or its effectiveness in day to . day activities of providers.  Neither has any oversight or guidance to its usability or efficacy in patient care.

It will take some time and effort to reverse the march toward a singularity of patient care and HIT.

Donald Trump is listening to experts in most areas of government management, including health care management and reform. Billions of dollars have been spent for HIT, at least half of which has been wasted.  The well known incentives were given to providers who could ill afford the huge IT expenditures.  Without that infusion of capital it is doubtful if the IT transformation would have occured.  The special interest group here is the IT hardware and software developers.  Huge EHR firms such as Cerner, Epic and others profitted greatly.

Verma's comment came in response to a question about the future of the CMS incentive program for meaningful use of EHRs, much criticized by physicians for turning them into data entry clerks. She also recounted seeing signs in physician waiting rooms that apologized for schedule delays due to EHR implementation. Yet another tech challenge she cited was the lack of EHR interoperability, which prevents different programs from freely exchanging data.

"We need to make sure [EHR technology] is fulfilling its promise and not being more burdensome," said Verma.

Other 'key elements" will effect Regulations, Mandatory Medicare Pilot Projects,(most of which have failed), and not vetted prior to implementation. Medicare Financial Risk (imposed by a negative incentive to diminish rembursement to providers who do not participate in QA measures.

Verma has some fresh approaches to Medicaid and funding HSA accounts.

She is the architect, for example, of a "consumer-directed" Medicaid program called Healthy Indiana Plan (HIP), which gives beneficiaries there something akin to a health savings account — a Personal Wellness and Responsibility (POWER) account — to apply toward a $2500 deductible. Verma also helped create HIP 2.0, which expanded Medicaid coverage in the state under the ACA with the help of federal dollars.

Launched in 2015 when Vice President Mike Pence was Indiana's governor, HIP 2.0 requires beneficiaries to contribute 2% of their income to their POWER (a Personal Wellness and Responsibility (POWER) account each month. That skin-in-the-game entitles them to extra benefits such as dental and vision coverage.

It remains to be seen if those with limited income do have the financial capacity to contribute 2% especially if there will be copays.

The Congressional Approval Process is in motion

While Senate Democrats appeared vexed at times with Verma, Republicans, who control the Finance Committee, praised her. "We have an outstanding nominee in front of us," said Sen. Michael Enzi (R-WY). "You haven't just studied Medicaid and Medicare; you've done things."

"You have acquitted yourself very well," added Sen. Orrin Hatch (R-UT), the committee chair.

The next step in the confirmation process is for the committee to send Verma's nomination to the full Senate for a final vote.

All in all the changes which may come are encouraging to most.

Trump Pick for CMS Would Ease Up on Physicians

Patient Prescription Advocacy

The next step is to integrate payors into new drug approvals. Many payors will not reimburse for newer therapies due to higher costs for recently developed drugs.  Patent law protects developers for 16 years in order that Pharma companies can recoup their cost for R & D.

Getting the FDA to approve drugs faster is seen as one way to get the access that many patients and their families want. Vice President Pence and many other legislators seem to have been persuaded that the FDA is the roadblock. It isn’t. The real barrier is payers of prescription drug benefits, such as health insurance companies and self-insured employers.

The premise that the FDA needs to speed things up worked in the late 1980s when AIDS activists and cancer groups successfully pressured the FDA to make the drug approval process faster. But this won’t work today because payers, which weren’t nearly as influential 30 years ago, now regulate access to drugs. To speed access to new treatments, then, groups need to incorporate payers into their strategies.

Payers of prescription drug benefits have become crucial in controlling access to drugs over the last three decades. During that time, tens of millions of people gained coverage for prescription drugs. This has improved access to drugs for those with coverage. But it has also taken the decisions that individual patients once made about whether or not to pay for prescriptions and aggregated them under the authority of payers.  Payers make decisions that balance the needs of the covered group as a whole against their organizational objectives, rather than focusing on individual patient situations. Coverage for the group often comes at the cost of an individual patient.

In the early days of prescription drug coverage, payers mostly paid the bills as pharmacies submitted them. But as prescription drug benefit plan costs soared from expanding use and escalating prices, payers began narrowing coverage policies and applying aggressive utilization oversight. Now payers are demanding evidence of drug safety and effectiveness that goes far beyond what the FDA requires for market approval as a basis for prescription drug coverage.

Groups looking to speed access to new therapies need to work with payers to identify clinical benefits and economic value at the same time that they push for rapid regulatory approval. This is not easy during the pre-approval, clinical trial period. However, patient groups and pharmaceutical developers could use their expanded access programs and patient registries to generate the evidence that payers need to evaluate new drugs.

Access to new treatments will not improve just by beating on the FDA. It will mean cooperating with payers, too.

This places the burden for proof of efficacy and cost effectiveness on the patient and the providers.

Perhaps this is a new focus for Patient Prescription Advocacy .  

NYU School of Medicine Working Group on Compassionate Use and Pre-Approval Access

This source of information goes into great deal about the approval process.

The FDA isn’t the only roadblock to accessing to new therapies

California Health Care Foundation -- Health Care That Works for All Californians

The Affordable Care Act is at a crossroad.  Repeal or Amend ?  Those are terms which require explanation. To repeal the act without a replacement would be a disaster and tragic for many who have learned how to enter the system. If that were to be jerked away from them it would be premeditated disregard and further increase mistrust in our government.

Knowledgable health professionals would agree the act needs to be significantly amended. This is very possible and most likely.  Many acts and laws have been amended in the past.  Our current political divide near 50/50 with representatives voting along party lines make the task more difficult than it could be.

Resource Center for Amending the Affordable Care Act . This page will be updated regularly

This resource is brought to you by the California Health Care Foundation

As the debate over the repeal of the Affordable Care Act (ACA) evolves, CHCF will maintain a list of data resources and emerging analyses, from CHCF and other organizations, on the potential impact on California. This list is organized by the potential impact of ACA repeal on coverage, economic indicators and health care spending, and insurance market regulations, although some resources span multiple categories. Within each category, resources are organized chronologically.  

Uncertain Future for the ACAFAQs on Repeal and Replace

Our entire health system is a gordian knot of complexity and confounding regulations. It will be a challenge to unravel it without disturbing many sections that work quite well.  The most likely early amendments will be eliminating the individual mandate. which is a . tax penalty for non-enrollment in an approved plan. And despite the law many . people have been granted an exemption for . financial reasons. The law is quite arbitrary, black and white and does not allow for many who have extenuating financial or health concerns.

Updates,  ITUP


California Health Care Foundation -- Health Care That Works for All Californians

On the Path to a Medical Career

During this time of uncertaintly in health care it is important to identify if a medical career is a goal you or your children wish to pursue.

Early decision will make it somewhat easier to decide on the path.  When choosing, most individuals do not know what specialty to chose.

Choosing your career is always difficult – but with many medical careers overlapping in the types of patients they deal with or the locations they work in, budding health professionals really have their work cut out for them.

So what should you consider if you’re deciding between two roles?

Consider your college degree

One of the biggest and most crucial steps in your journey through the health industry is studying for your college degree. If you get a good feeling about a particular subject, chances are you’ll love the job it leads you to.   If you’re unsure whether to become a physician assistant or a doctor, for example, consider the fact that PA qualifications can be as short as two years while medical degrees are far longer. How long would you like to spend in education, and does the course content seem like a good fit for you?

Consider getting some work experience

Another very effective litmus test for your future medical career is to get some work experience. Not only do internships and shadowing placements give you something great to speak about in interviews or on your college application, it also gives you the chance to see the reality of your chosen role.
Want to speak to someone about the stresses of the job, the training and the night shifts? Speak to someone who’s in that position right now, and ask them about the key differences between the roles.

The world of healthcare is extremely varied and interesting. Depending on your qualifications, you could find yourself working on a cruise ship, at a school or abroad – the options for healthcare professionals are practically limitless! Focus on the huge possibilities of your future health career, and we’re sure you’ll find a role that makes you jump out of bed in the morning.

These are many ways to gain exposure to a future career in medicine. Volunteering at a local hospital or clinic, to shadow a physician or to engage in something more exotic, such as a medical internship abroad

Advice for girls and women interested in surgical careers.  In most cases surgical careers are much more demanding of time and commitment, during training and into practice..

Surgery is a demanding career. Do it if you can’t imagine doing anything else. But, if you have the passion, the tolerance for the hard work and the long hours, you will be rewarded by transforming lives.

There are still many challenges to overcome, such as improving work life balance and making childbearing easier for women surgeons. But as I think back on Elizabeth Blackwell, I am heartened that change will come so that the field is truly welcoming to any woman who wants to become a plastic surgeon, have children and maintain a happy marriage.

If you wish to pursue a career in health there are many options besides an M.D. Here is the shortlist;
Physician's Assistant, Laboratory technician, Nurse practitioner,  Nurse, Radiology technician, Pharmacy technician, or Pharmacist.  All of these occupations require less time and education.


It is a good time to enter the health professions. Despite what you hear it is an exciting area to work in.  Motivation as to why you chose a particular field is important.  Perhaps the most is your interest and curiosity about the subject.



Choosing between multiple medical careers

Openness and Transparency | Public Health | JAMA | The EU is way ahead

The European Medicines Agency and Publication of Clinical Study Reports

A Challenge for the US FDA

Anna L. Davis, JD, MPH¹; James Dabney Miller, JD, MPH¹

The US Food and Drug Administration (FDA) has been the standard of drug regulation worldwide for decades. In 1962, in response to the thalidomide tragedy, Congress directed the FDA to evaluate the effectiveness of drugs based on “adequate and well-controlled investigations, including clinical investigations” conducted by qualified experts.

Backed by this congressional enactment, the FDA crafted groundbreaking administrative regulations (eg, the requirements of a prespecified protocol, placebo or active controls, the phasing of clinical investigations, and informed consent from patients) that have guided the global clinical trial enterprise ever since.¹ The FDA’s regulations revolutionized the evaluation of drugs in the United States and abroad.

However, the European Medicines Agency (EMA), the counterpart to the FDA in the European Union, is poised to leapfrog ahead of the FDA in an equally important drug regulatory space of transparency. In October 2016, the EMA published on its website the clinical study reports for 2 drugs (carfilzomib and lesinurad) it recently approved. In so doing, the EMA enabled access to approximately 260 000 pages of detailed clinical trial information, including the protocol, statistical analysis, and detailed clinical data. Although some information was redacted to protect patient privacy, the EMA considered only 2 pages to contain “confidential commercial information.”

he EMA adopted policy No. 0070 to achieve the goals of “better informed use of medicines” and “to make medicine development more efficient” by allowing researchers to “learn from past successes and failures.” The EMA concluded that disclosure of detailed clinical data would enable the development of “new knowledge in the interest of public health.” Whether policy No. 0070 will achieve these goals is an unproven hypothesis, but, by publishing clinical study reports, the EMA has arranged a form of natural experiment that should allow an estimate of the actual benefit, if any, from its new policy.

However, policy No. 0070 faces legal uncertainty. In July 2016, the EU General Court issued an interim injunction that has the potential to undermine or reverse that policy.⁷ In that case, PTC Therapeutics submitted to the EMA a clinical study report of a phase 2 controlled efficacy study of ataluren for the treatment of Duchenne muscular dystrophy. Based on that clinical study report, the EMA conditionally approved ataluren in July 2014. Another unidentified pharmaceutical company requested a copy of the ataluren clinical study report. The EMA offered to redact several portions of the clinical study report, but PTC Therapeutics took the position that the entire clinical study report was confidential commercial information.The challenge the FDA must confront is that the clinical study reports submitted in support of drug marketing applications in the United States are basically the same as in the European Union.⁸ The FDA currently considers clinical data to be confidential commercial information, whereas the EMA does not. The EMA’s policy No. 0070—if it survives the current legal case with PTC Therapeutics—could lead to the anomaly that the EMA proactively publishes clinical study reports online (after decisions are made regarding marketing authorization applications), whereas the FDA withholds the same or similar clinical study reports. Despite the importance of this issue to public health, in neither the United States nor the European Union is there yet clear legal authority on whether clinical study reports should be made public and, if so, under what conditions.

The European Medicines Agency and Clinical Study Reports | Public Health | JAMA | The JAMA Network

TruthinRx . Drug Costs Skyrocket

Spending on US medicine increased 20% from 2013 to 2015 – why are yours so costly? Find out. #TruthinRx

source 

A recent survey of over 3,000 brand name prescription medications found that prices have more than doubled for over 60 drugs since 2014. As the prices of prescription medications continue to rise, physicians have a responsibility to educate their patients.

TruthinRx.org allows patients to learn who controls the prices of their medications and why those prices are increasing. The interactive site provides facts, informational resources and ways that you and your patients can take action to increase drug price transparency.

Have you ever notice the difference in charges for a cash paying customer at the pharmacy ? Do you have one of those generic Rx Discount Cards ?  Does your healthplan get bulk rates ?  Why is a mailorder pharmacy less expensive, and why do some healthplans offer a no copay plan if you order through their own mail order plan ?

Let's do a deepdyve into these questions.
     y
Your Story about Your Drug Costs
YYO . 
Prescription medications aren’t like other consumer products. Like food, shelter, and water, they can be a matter of life or death. Yet, patients are left in the dark as to why the price of medicine and their out-of-pocket costs are rising.

The costs of prescription drugs are often negotiated by drug players who aren’t required to disclose their pricing agreements. These middlemen turn a profit, while patients continue to pay a high premium.

If pharmaceutical companies aren’t required to explain their rising prescription drug prices, it could eventually make health care unaffordable for many Americans. Help us protect the future of health care.

Get Informed

Control Your Costs   Click to find out how



Share your story about your drug costs

Share your story about your drug costs

TruthinRx

Giving Patients an Active Role in Their Health Care

As payment and care delivery models shift in the United States from episodic, fee-for-service care toward population health and value-based reimbursement, health care leaders are focused more than ever on patient engagement as a key to driving down costs and improving outcomes. And yet, as so many of us know who have attempted to manage our own care or tend to sick family members, the U.S. health care system rarely feels like it’s been set up to help us succeed.

What’s needed is a fundamental redesign of the patient’s role — from that of a passive recipient of care to an active participant charged with defined responsibilities, equipped to dispatch them, and accountable for the results. In other words, we need to view the patient’s role as a job and then design that job in such a way as to drive the best health outcomes possible.

Not only is it important to define the role of the patient, it is important to teach patients their role in using health IT in a focused and limited manner, taking care to not overwhelm them with minutiae.  This will include developing a routine to examine their portal, and to inquire about devices or functionality to manage their health conditions.  Most patient already utilize search engines to educate themselves.  Health professionals already use other data bases, such as PubMed, Clinicaltrials.gov and numerous sites such as CMS.gov.

The controversy and political infighting challenges even physicians.  However patients must not be ignored in the process of revising the system..  This was a major reason for the failure of the Affordable Care Act. No one asked patients what they need. That is a failure of our system. 

Patient advocates and others who have studied the U.S. health care system have catalogued the degree of “unpaid,” and unsupported, work patients take on in service of their own care. The average, low-risk patient must follow up on referrals to specialists, fill and manage medications, and comply with physical therapy and other regimes. With legacy, pre-internet software systems still the norm in most hospital environments, patients also become unpaid couriers, shuttling critical health data from one provider to the next.

The Patient’s “Burden of Treatment”

Patient advocates and others who have studied the U.S. health care system have catalogued the degree of “unpaid,” and unsupported, work patients take on in service of their own care. The average, low-risk patient must follow up on referrals to specialists, fill and manage medications, and comply with physical therapy and other regimes. With legacy, pre-internet software systems still the norm in most hospital environments, patients also become unpaid couriers, shuttling critical health data from one provider to the next.  

It is still common for a patient to arrive at a tertiary or university medical center, expecting the referral physician to have records from the referring doctor.  Many have learned that it is mandatory for them to carry written records, MRIs, Angiography, or more to the visit.  When applying for disability, the task is even worse.  For chronic conditions it is even worse, since agencies want the complete history which may date back a decade or more. It is not uncommon for applications for SS disability benefits may take a year or more and require multiple attempt to achieve success at the process.  This is wasteful of patient and professional time and increase costs.

For patients who suffer from chronic or complex conditions, as a Mayo Clinic paper recently argued, the “burden of treatment” must be shouldered alongside the “burden of illness.” A 2012 study cited by the study’s authors estimated that the self-management of a chronic illness demands, on average, two hours of patient work each day — work that is often poorly supported, stressful, and frustrating in nature.  For all the articles advocating for “patient-centered care,” this is the change that we ultimately must be willing to make: Rather than having patients as passive recipients of care, they must be active producers of their care, in partnership and coordination with physicians and clinical staff. So what are the requirements for getting to that end state?

Account for Patient Work Across the Full Care Journey

First, we need to acknowledge and account for all the patient work that now goes unrecognized and unsupported. This means grappling with the complexity of tasks patients take on as they seek care across an ever-expanding number of settings — work that varies widely depending on acuity level, disease state, demographics, insurance type, socioeconomic conditions, and so on.

But the way we access and experience care has changed. Where we used to have a lifelong relationship with a family doctor, we now switch doctors frequently due to scheduling issues, changes in insurance coverage, and other factors. We’re also more likely to seek care outside the walls of health systems or the boundaries of specific networks — whether it be through urgent care visits, virtual consults, or alternative therapies. And we know that much of what affects our health, for better or worse, happens between visits. Who is accountable for measuring the patient experience over time and across all of these disparate care settings?

As we shift toward population health, with provider reimbursements tied directly to improved outcomes, we need to move from managing episodes of care to managing the entire patient journey across the full ecosystem of care. The patient journey becomes the operational backdrop against which patients, physicians, and other staff and caregivers must play their respective parts.

Intentionally Design the Patient’s Job into the System

If the patient is to have a job in the care-delivery process, we must apply the same principles of intentional work design to their jobs as we do to those of physicians and clinical staff. In a recent Physician Leadership and Engagement Survey conducted by athenahealth with 2,000 doctors, we found that only 20% of doctors surveyed reported high levels of engagement in their jobs. Those who were highly engaged, however, pointed to a few key drivers: trust in leadership and the system, open communication and feedback, and an operationally effective work environment that allows them to deliver high-quality patient care. It’s not a stretch to that patients would be engaged and motivated by the same drivers.