Blog Posts

The following is an excerpt from an opinion piece written by our co-founder, Christine Bechtel, and published in USA Today: I'd never cried in a doctor's office. But there I was, a few weeks back, sobbing in the exam room. As a new resident of Fort Myers, Florida, I was trying to establish a relationship with a local primary care physician. From the start, the doctor's focus was her computer, not me. She stared at a screen, while I stared off into space. She challenged me on why I had an inhaler prescribed by a previous doctor. I explained that hay fever leaves me short of breath. But her screen said I needed an asthma diagnosis, which I don't have. Then she asked why my blood pressure was so high – a first for me. Bewildered, I said I'd ended a lifelong friendship the night before. Sidetracked again: It turns out there is no software code for that. I needed a dose of kindness and some clinical insight. I got clicking and keystrokes instead. The tears flowed soon after. All I wanted was a human connection, but the doctor-patient relationship – the most important element in all of health care – was dead on arrival. Read the full article Learn more about 3rd Conversation and how X4 Health is working to infuse relationships, empathy, and human connection back into the health care system

Blueprint helps communities develop recovery plans as they focus on current challenges WASHINGTON D.C. – FEBRUARY 16, 2021 – Today, X4 Health and the University of Oregon Institute for Policy Research & Engagement announce the release of Community ROCKit—a free COVID-19 recovery planning Blueprint and related implementation white paper that consolidate the best COVID recovery planning work from around the country into one health and economic recovery guide. ROCKit stands for Resource Organizer for COVID Kit, and is inspired by the idea of locating and using new combinations of existing community resources to help cities, counties and states develop pandemic recovery strategies. Its backbone is the ROCKit Blueprint, which helps communities prioritize recovery efforts by focusing on the needs of vulnerable people and economic sectors that have been most impacted by COVID-19. “Right now, communities face multiple competing crises in addition to COVID, and leaders are exhausted with planning fatigue,” said Christine Bechtel, co-founder of X4 Health. “Our goal in building the Blueprint tool was simple: curate some of the best plans available and create a free resource anyone can use to make their own planning process easier.” The ROCKit recovery planning Blueprint uses research conducted by the University of Oregon and X4 Health, a social impact organization focused on improving health care. The implementation white paper provides guidance for how local leaders can use the resources they have on-hand to address health and economic hardships caused by the pandemic. “The time for recovery planning is now – even though we’re still in the throes of responding to the pandemic,” said Robert Parker, AICP; the Director of Strategy and Technical Solutions for the Institute at University of Oregon. “Each day that passes without a plan will lengthen the recovery period for local communities. ROCKit is a clear recovery strategy easily unpacked and implemented by local government, health care and community leaders.” The ROCKit Blueprint is divided into eight domains – health, government, infrastructure, housing & food, childcare, education, public safety and economy. Leaders can use the Blueprint to identify a starter set of objectives and tactics that are important in the first six months of recovery planning, and then revisit those objectives and the larger Blueprint every six months for new ideas, thinking and next steps. Visit www.communityrockit.org to learn more about the ROCKit open-source recovery planning tool and download the implementation white paper. About X4 Health X4 Health is a purpose driven organization passionate about using social impact design to solve problems that matter. A virtual organization that works “virtually everywhere,” X4 has been the innovation engine behind initiatives ranging from Community ROCKit to 3rd Conversation . More at www.x4health.com About the University of Oregon’s Institute for Policy Research & Engagement (IPRE) IPRE transforms communities through research and action. Housed in the School of Planning, Public Policy & Management, IPRE has been at the leading edge of efforts to understand the impacts of the pandemic and developing strategies that support recovery and a more resilient future. Media Contact: Lauren Garetto 503-912-7687 Lauren@thinkhubbell.com

Seven of the nation’s largest primary care physician organizations today released recommendations on the urgent need to change the way primary care is delivered and financed. The American Academy of Family Physicians, the American Academy of Pediatrics, the American Board of Family Medicine, the American Board of Internal Medicine, the American Board of Pediatrics, the American College of Physicians, and the Society of General Internal Medicine represent more than 400,000 physicians and have created a unified vision to change the conversation and modernize primary care as we know it. This collaborative work comes at a critical time when the health of the population has weakened, and the primary care setting has been severely strained by COVID-19. Handling nearly 40 percent of all health care visits, primary care clinicians have made incredible adaptations to continue to provide care during the pandemic, yet they have been largely left out of national pandemic relief legislation. A series of clinician surveys conducted during the pandemic has shown widespread closures and layoffs among primary care practices despite the critical role these practices and clinicians play in pandemic recovery efforts. “Primary care physicians cannot adequately meet the needs of their communities if they remain shackled to payment schemes which reimburse for volume instead of value,” said John Brady, MD, Chair of the American Board of Family Medicine. In an open letter to policy makers, payers, purchasers and the public, the seven organizations call on: The federal government to increase investment in safety net programs, public health agencies and community-based services and support so that they may partner with the medical care sector in addressing structural racism and social drivers of health. Health care organizations to invest in existing community-based social services and ensure that the flow of dollars supports services such as food banks and other safety net programs that address social drivers of health. Fellow physician and clinician societies to create a roadmap for dismantling the policies and regulatory structures that enshrine the current paradigm, and to build multi-stakeholder support for a roadmap. The collaboration was convened by the Larry A. Green Center and facilitated by X4 Health as part of their continuing effort to change the conversations around primary care in support of improved health for all Americans and the strengthening of primary care. Learn more at www.newprimarycareparadigm.org .

Financial troubles for primary care providers are being keenly felt by patients, with most saying their clinic’s closure would be a disaster for the strong patient-provider relationship so many credit for their wellness, according to the latest from the Primary Care Collaborative, the Larry A. Green Center, and 3rd Conversation. The week 11 poll tracking the state of primary care throughout the novel coronavirus pandemic looked at both patient and provider sentiment. The survey asked respondents about the risk to primary care and how it has impacted patients, and how it may continue to do so moving forward. This comes as the financial threat to primary care provider offices draws nearer. As a result of the novel coronavirus, the number of patients visiting primary care has tanked. Per the week eight survey from PCC and the Larry A. Green Center, 70 percent of primary care providers have seen patient volumes decrease. And as a result, profit margins are shrinking. That same PCC and Larry A. Green Center survey showed that about a fifth of primary care offices are closing, while more are furloughing staff and bleeding profits. Read the full article on Patient Engagement HIT Learn more about the survey

RICHMOND, Va., May 27, 2020 - New data released today by the  Larry Green Center ,  in collaboration with  3rd Conversation  and the  Primary Care Collaborative  (PCC), shows Americans report feeling 'panicked, upset, or heartbroken' at the prospect of losing their primary care clinician, with 75 percent of respondents reporting a strong, established relationship with their doctor.  
This data, which analyzes the attitudes of more than 2,250 primary care patients nationwide, sheds a light on patient fears as primary care practices are at high risk of closure. As reported by the Larry Green Center and PCC in May 2020, more than 40 percent of primary care practices have made staff layoffs over the last eight weeks, and more than half are uncertain about their financial future one month from now.  
Simultaneously practices are being pushed to the financial brink as demand from patients has increased. The survey showed nearly half of patients have been in contact with their primary care practice over the last eight weeks, with 1.6 touch-points per patient, a majority happening over telephone or telemedicine. Despite this activity, practices are facing major financial losses due to longstanding policies that favor in person care. 
"The COVID-19 pandemic has put our chronic underinvestment in primary-care on full display," said Dr. Rebecca Etz, PhD, co-director of The Larry Green Center and associate professor of Family Medicine and Population Health at Virginia Commonwealth University. "Without immediate financial support we are looking at a matter of weeks, not months, that patient's fears about primary care will turn into reality."  
"By any traditional business metrics, thousands of primary care practices should be closing their doors right now – but they stay open for us, their patients," said Christine Bechtel, patient advocate and co-founder of 3rd Conversation. "The fact that, in the middle of a pandemic, our health professionals are struggling to keep their doors open is not just a frightening prospect, it is unacceptable. Lawmakers must act to provide immediate relief targeted to primary care practices," she said. 
In spite of ongoing concern for the future of primary care, both patients and clinicians have a greater fear: re-opening the country before it's too soon. As several states begin opening their economies, nearly 80 percent of patients and 90 percent of clinicians report they feel it is too soon – underscoring mounting concern of a potential second wave of COVID-19 if social distancing measures are relaxed.  
"At a time when distrust of institutions is at an all-time high, 70% of patients report feeling secure in their trust of primary care," said Ann Greiner, president and CEO of the Primary Care Collaborative. "Primary care is central to helping patients navigate this crisis right now.  It will be essential in the months ahead as states begin to re-open and Americans turn to trusted sources to help them transition back to work and school." 
The survey was conducted online and was open to people 18 or older. The survey results reflect input from 2,250 respondents from a range of education levels (34% high school degree; 47% college degree; 14% graduate degree); income levels (44% less than $50,000 household income; 8% greater than $150,000 household income); and geographies (30% urban and 21% rural). One-third were 18-35 years old; one-third were over 50. Level of health varied, with 36% rating their health as very good and 30% saying good. 46% were male, 52% female; 43% were employed full-time, and 19% were employed part-time. 21% lost employment during the pandemic. 
For more information about the survey, visit the Larry Green Center  and the Primary Care Collaborative .
About The Green Center: 
The Larry A. Green Center for the Advancement of Primary Health Care for the Public Good is a thought collective founded by Rebecca Etz, PhD at Virginia Commonwealth University and Kurt Stange, MD, PhD at Case Western Reserve University. The Green Center works to reclaim and reconstitute the intellectual foundations of primary care, to advance the science of medicine learned and practiced within layered and competing social frameworks of meaning, and to deliver on a now 50 year old promise: better health and improved health care through a synergistic focus on both humanism and healing. We are nimble, inquisitive, curious, and open. We make personal doctoring and innovation visible.  
About PCC: 
Founded in 2006,  Primary Care Collaborative  (PCC), formerly known as Patient-Centered Primary Care Collaborative, is a nonprofit multi-stakeholder membership organization dedicated to advancing an effective and efficient health system built on a strong foundation of primary care and the patient-centered medical home. Representing a broad group of public and private organizations, PCC's mission is to unify and engage diverse stakeholders in promoting policies and sharing best practices that support growth of high-performing primary care and achieve the "Quadruple Aim": better care, better health, lower costs, and greater joy for clinicians and staff in delivery of care.  
About 3rd Conversation:
3rd Conversation  is a national initiative reimagining the future of health care by reinventing the provider-patient relationship for the modern era. Powered by  X4 Health , 3rd Conversation works at both the local and national levels to address health professional burnout, improve patient experience and realize the promise of humanity and connection in our health care system. Funding support is provided by the Morris-Singer Foundation.  
Media Contacts:
Stephen Padre,  spadre@pcpcc.org , 202-360-6971
Maureen Abel,  mabel@brgcommunications.com , 443-631-5090

I decided to write this note because I am grieving. I am grieving for those infected and affected by the coronavirus pandemic, of course. But the deepest grief I feel right now is for my fellow healthcare workers who I know will be going through their toughest days in the next few months. I hate that so many of you will be forced to go through this experience, whether you like it or not. In November 2014, I traveled to Sierra Leone at the height of the Ebola epidemic to work in an isolation unit in Freetown. I would have never guessed that this experience would prepare me so well for today. No two disasters are ever the same, but I want to share with you some of the thoughts and emotions I felt before, during, and after my experience in the isolation unit in hopes that you realize that it’s not just you. I know what you’re feeling. When I learned of the severe healthcare workforce shortage that resulted as the virus ravaged hospitals and clinics in West Africa, I felt a calling. I had no idea what I could offer them, but I knew I would do whatever was asked of me because I took an oath when I started my journey in medicine. I was scared, but my sense of duty quickly overrode my feelings. Entering the fray, I felt like I was living in a dream world. The first day I donned my PPE to enter the isolation unit, I thought to myself, “this can’t be real.” I walked through the unit like I was filming a low budget film with a cell phone, my eyes capturing one scene at a time that I would later string together.
I was certain I was going to get Ebola. The night of my first shift in the isolation unit, I nearly scrubbed a layer of skin off in the shower because I felt like I was covered in virus. When I went back to the hospital the next day for my shift, I told my colleagues that I thought I had Ebola. They all laughed and said, “we did too.”
We felt removed and isolated from our friends and families. Not because we were thousands of miles away but because no one else could even begin to understand the amount of pain and suffering that we were witnessing every day. We felt like we only had each other. In an epidemic that required social and physical distancing, we craved human touch. One night, after a month of being there and one too many beers, a colleague gave me a hug as we parted ways. We just stood there in each other’s arms in the middle of the street, and I swear I have never felt a hug as warm and as comforting as that one. I felt robotic and devoid of emotions. Being in full PPE that reveals only your eyes, you become a mechanical creature. You smile, but no one can see your smile. You cry, and you can’t wipe your tears. Your job is to bag the bodies of those who died the shift before you and drag them into the makeshift morgue that is already full of body bags. You walk out to triage a patient that was brought to the hospital gates in your PPE, and everyone moves out of the way like you’re the harbinger of death. You turn the patient onto his back, and you know he is dead. The family members are wailing, and you want to hold them, tell them how sorry you are, to grieve with them – instead, you tell them to stay away from their dead son because a corpse is highly infectious. You feel numb.
We were forced to take time away from the unit every week. As we sat on the local beach eating fresh lobster with a cold beer, we all felt guilty about being there. We felt the need to rush back to the isolation unit where more folks were dying, and more colleagues were sweating in their PPE. It was like a gravitational pull back into the darkness. We would often try to make each other laugh, but then a tiny voice in your head would criticize you for making light of the situation. It took a while to give ourselves permission to have fun in the midst of devastation. This continued long after I left Sierra Leone. I became accustomed to making impossible decisions in an imperfect setting. We lost friends and colleagues to the disease. They were our fellow warriors who worked alongside us. It’s impossible to focus on work when your colleagues are fighting for their lives. But we had to, and we did. It hurt like hell.
When I returned home, I felt like a vector of disease. I carried a thermometer everywhere I went. With any little change to my body, I would check my temperature and lock myself in a room just in case. I advised friends and family to stay away from me until my 21-day quarantine period was over. Some folks refused to hug me even after that. Some of my former colleagues were uninvited from weddings and birthday parties. The feeling of isolation intensified. I came to appreciate so many of the things I took for granted, and most of all, good health. I saw communities come together in ways that gave me so much hope while surrounded by utter desperation. I felt the warmth of human connection, even with social distancing, even with my full PPE. And perhaps most importantly, I learned that I am a person who has the tenacity and grit to make it through the toughest of situations. That I am resilient. That we are resilient. Written by: Jeri Sumitani Original Blog posted HERE

I often hear professionals talking about “working at the top of their license” – contributing their highest skills according to their training. To overcome this pandemic, now more than ever, every single one of us will need to work and live at the top of our humanity. Patients, families, nurses, doctors, front desk staff, administrators, lab techs, health plan executives – everyone – must find even small ways to create the kind of human connection and community that keep us going, and especially clinicians on the frontlines. It’s going to be tempting to engage in blame and shame about all that is wrong with the system as it buckles under the weight of the COVID-19 pandemic. But this could shatter the human spirit that has kept the health care system afloat until now. Pre-COVID-19, we were already in trouble: patients struggling to navigate its complexities and cost, a shortage of primary care professionals, many suffering from burnout, and some so miserable they are jumping from buildings. As a patient, I’m worried about what coronavirus will do to our system. I know clinicians are too. How do we live at the top of our humanity? There are some insights that might help us. In a free, foundation-funded program called the 3rd Conversation, over the past two years, we facilitated in-person gatherings of clinicians and patients in 10 communities, and we learned a lot about the humans of health care. We paired frontline health professionals with patients to share personal stories and explore ways they collectively needed the system to change in order to make it more human-centered. We didn’t just focus on patient stories, either. Clinicians got vulnerable and told their stories too. What we heard:
Clinicians described a kind of moral injury — how the design of today’s system sometimes forces them to behave in ways that are counter to their deeper calling to heal people. Like rushing patients through appointments without answering all their questions in order to meet productivity goals on which many salaries are based. Patients said they felt lost, frustrated, and powerless, but also said they were grateful for their relationships with their providers and cared deeply about clinicians as people. Administrators told us they felt ground down, trying to lead amidst massive amounts of pressure and unpredictability, feeling a sense of isolation and yet also a deep yearning to connect more meaningfully to patients, colleagues and to a larger sense of purpose. Some key takeaways emerged that might help us bolster the system in this unprecedented time: 1. Human connection is a balm; it’s an antidote to the isolation we feel on any given day in the pre-coronavirus health care system. It helps patients navigate the complexities of care. It helps providers survive just one more day, or week, or month on the job and remember why they chose this profession in the first place. It makes a trying experience better for everyone.
2. Each one of us holds an important kind of power.  Patients have the power to make clinicians’ days better through simple acts of human connection and empathy, even while appropriately distanced. Clinicians have the power to connect at a deeper emotive level, showing vulnerability with patients and with peers, which creates deep and authentic connections that help them through their days in immeasurable ways. System administrators have a different kind of power to be sure, but the opportunity to feel seen and supported in their own humanity helps these leaders maintain the personal reserves required to stay on the job day after day. 3, We have more in common than we know, even when we play different roles in the health care system. Empathy reminds us all of our common humanity. We are in this together. And it feels better just to know that. Bottom line: There is joy and relief in authentic human connection, and this is highly at risk in the coronavirus world as less physical connection, and more social distancing become the norm (appropriately). As patients and providers take all the necessary physical and social precautions, my hope is that we also take extraordinary measures to leverage the relationships between us as a source of sustenance.
When the pandemic subsides, we will need a new national conversation about many things – including how we engineer the humanity back into our system, once and for all. A way of focusing on the “who and the why” of health care first, and then rebuilding the “what and the how” around the humans that should have always been at the center of our system. But for now … To our health care professionals, clinicians and staff: thank you. Thank you for choosing one of the most challenging and rewarding professions, for being there when we need you the most. There are so many moments ahead of us that we’ve never encountered or planned for. We are here for you. Tell us what you need, and let us care for you, too. Original Blog posted HERE

Dear Health Care Professionals: We know many of you will be too busy caring for the sick to read this letter but our hope is that if/when you read it, it will lift your spirits and help you understand how grateful we are for you. We know the Covid-19 pandemic is incredibly difficult on you and your families and perhaps more so as you hear about or see on the news some Americans gathering in public spaces or partying on beaches. In talking with friends, neighbors, and family members around the country, we want you to know that the vast majority of people are doing whatever we can to minimize contact and “flatten the curve”. We truly understand how dire things are and we want you to know: we are in this together with you. Here’s what friends, neighbors and family members have told us: We know many of you lack the proper gowns and masks to protect yourself from infection. Some of us are working to sew masks and gowns because we know how much you need them. We know you feel isolated and disconnected so we created a Facebook Group focused on providing support and human connection to one another during the pandemic. Please join us there . We know you want to use your skills to be on the front lines battling this pandemic but some of you lack child care. We’re thinking about creative ways to provide care without compromising social distancing. We understand that the lack of Covid-19 testing makes your jobs even harder and increases anxiety about how many patients you may need to care for in the upcoming weeks. We’re calling our health departments and asking how we can help set up and use drive-through testing. We’re reading recent reports that health care professionals may be at greater risk of contracting Covid-19 so we’re emailing, texting and calling our friends, neighbors and family members and urging them to practice social distancing and even self-quarantine to protect themselves you and your colleagues. We know many of you are spending 12+ hour days at the hospital and have had no time to cook. We’re coming together to cook and deliver meals to you. This is just a small list of the many ways Americans are coming together in this pandemic to do our part and to help you to do yours. Please know we are forever grateful to each of you for risking your own health to care for us. Love, Jen Sweeney and Your Patients

In November 2019, Health Affairs published an article by Sunny C. Lin and colleagues that analyzed data on the number of patients who accessed their health records online as a result of the federal Promoting Interoperability Program (formerly known as Meaningful Use). The low proportion (10 percent of patients with online access to their records used it) led the authors to conclude that the patient access aspect of the program was a “public policy failure.”  As consumer advocates, we strongly agree that the program’s patient access requirements should have been much stronger, and we advocated against the changes that weakened them substantially in previous years. But it’s also important to recognize—and address—the major underlying problems: misaligned financial incentives and significant gaps in usability.   Patient Demand Is Not The Problem   As veterans of the early movement to democratize health data by putting it squarely in the hands of patients and their families, we have witnessed many forms of pushback against efforts to enable patients such access. Among the most common arguments are that patients don’t want or won’t understand their health records, or that the privacy risks outweigh the benefits. But survey data have consistently shown that patients want and would, in fact, access their information, if they knew the capability existed and the process wasn’t too difficult relative to the value received. Despite patient interest, the process remains rife with obstacles and frustration, as illustrated by the GetMyHealthData campaign, which spent a year documenting what happened when patients requested their health records in electronic formats, as is their right under the law. The campaign showed that consumers definitely want their health data , but they are thwarted at almost every turn by outdated formats for information, inefficient delivery methods, cultural pushback, and exorbitant fees. But why?    Yes, Meaningful Use Policy Was Weak   As Lin and colleagues describe, the federal requirement that qualifying health care providers had to meet related to patient access was extraordinarily low—just one patient had to access his or her records online for a whole organization to get financial credit for participating in the program run by the Centers for Medicare and Medicaid Services (CMS). Pro-patient voices—including our own—had proposed stronger requirements, but policy drafts requiring that 10 percent of patients access their records were pared back to 5 percent and then eventually to the one patient requirement in response to strong industry opposition. We predicted back then this would be an epic mistake. Without the leadership and encouragement from providers as partners in consumer engagement to accelerate online access, few people would take advantage of—or maybe even know about it. Our fear was that low threshold requirements would increase the likelihood that providers would simply turn the capability on but never promote it. And that prediction has indeed come true.   We believed then, and still do, that providers must play the central role in educating and encouraging consumers to access their data because most people trust their doctor more than anyone else when it comes to matters of health. Studies have shown that 63 percent of patients who viewed their medical records were encouraged to do so by their providers. Only 38 percent of patients took the initiative on their own, according to the same survey.   Misaligned Economic Incentives in Health Care Dwarf Meaningful Use Issues   Although the absurdly low threshold for patient access set by Meaningful Use was a weak catalyst for change, the bigger problem is that the federal electronic health records (EHRs) incentive program was grafted onto a fee-for-service payment system that discourages data sharing, leading health care organizations to implement the minimum requirements but not the spirit of this policy. The problem of “data hoarding” is so great that Congress has repeatedly investigated it and recently established penalties for so-called “information blocking.”   In a nutshell—the data sharing and interoperability aspects of Meaningful Use were leading a horse to water that absolutely did not want to drink. Fee-for-service payment models continue to support inefficient and often harmful care, the costs of which are ultimately borne—in dollars and lives—by patients.   So What Now? Four Things We Can Do Today  And so, with the profound hope that this time decision makers, developers, and care providers will heed our voices, we offer the following solutions that, taken together, would be a game changer for patients, providers, and payers alike. The good news is, there are some areas in which we as a country appear to be on the right trajectory already—we just need to stay the course and override objections by those with vested interests in the status quo. A critical example of the former is the move toward value-based payment models. Fortunately, we have continued on that policy trajectory regardless of the change from the Obama to Trump administrations, which has radically changed policy direction in so many other areas.   These recommendations are intended for a broad audience including policy makers, providers, patient advocates, and technology developers.    Accelerate The Technical Requirements For Patient Access To Data Through Open Application Programming Interfaces Application programing interfaces (APIs) and standards such as fast healthcare interoperability resources (FHIR) will accelerate the development of new apps and services for both providers and patients that address a wide range of challenges, including the need to help patients and families gain more control over the access to and sharing of their health information. Although EHR vendors may not relish the competition, we believe that the system will benefit from enabling technology developers beyond those already entrenched in health care to apply their tools and design skills to health care’s challenges. Even absent any new competition, open APIs are a necessity to provide the best quality care. CMS is due any day now to issue a final regulation mandating that Medicare providers and health plans upgrade to EHRs that use open APIs, but the timeline for when providers would have to implement and use them is uncertain. If you are a payer or purchaser, make open APIs mandatory ASAP in 2020 through your contracting and payment levers. Don’t wait for the possible two-year timeline proposed by CMS in the draft regulation. If you are a care provider, update your EHR, ASAP. Bi-directional information sharing in automated ways will enable patients to become partners in supplying needed data and help reduce your documentation burdens through automation. If you are an EHR vendor, ensure that 100 percent of your clients implement and benefit from open APIs. There are plenty of ways to differentiate and grow your service based on better design and performance that supports improved health outcomes.   Create An Immediate Bridge To The World Of Open APIs By Using Technology That Consumers Have Right Now—Email  App developers can assign secure email addresses to their users in a way that allows patients to have structured data sent to the app without having to wait on API implementation or fight with providers about how best to connect specific apps to data. The federal Office of the National Coordinator for Health IT’s 2013 Blue Button Challenge showed this was possible, and easy. It’s not a solution for all types of data but is a solution for a large chunk of data currently held in EHRs, as well as insurance claims data. If you’re a health care data holder, make sure email is a delivery option on your HIPAA records request form, and on your encounter intake forms. You can also model your HIPAA records request process on the Health Record Wizard , a grant-funded effort that developed an idealized process that encourages electronic delivery options, such as to email and apps.  We hope that in the foreseeable future, the widespread adoption of open APIs will obviate this need. However, HIPAA forms aren’t going anywhere anytime soon, and none of them list an app as an approved delivery method for patient records. But many do list email. This will help patients “hack the system” so to speak, as we await full implementation of open APIs. It will also help consumers who prefer not to use an app or are unable to easily link their preferred app to the data holder’s system.   Strengthen Our Privacy Policy Framework  It’s time to get serious about a new national conversation on privacy, starting with rules of the road for app developers, Google, Facebook, and others with access to massive data sets that ignore the boundaries of health and other data currently reflected in our national legal framework for privacy. This will take some time, but consumers must be able to trust apps, developers, and data holders for all of this to work. The recent uproar about news regarding Ascension and Google’s Project Nightingale demonstrates the public’s (appropriate) concern over privacy and technology, particularly when it comes to matters of health. HIPAA, the predominant legal framework for health data, is already wildly insufficient for protecting health data, both because the re-identification of de-identified data becomes increasingly easy as the volume of data about individuals grows and because HIPAA applies only to a set of “covered entities,” which do not always include many of the parties developing and using new health apps and services. The latest studies indicate that research participants can be identified by their MRI scans alone, even after they have been stripped of all identifying information including the 13 identifiers that HIPAA uses to define “legally protected health information.” The increasing use of artificial intelligence and genomic sequencing in health care will only make matters worse. We believe a more comprehensive policy approach to privacy, such as the European Union’s General Data Protection Regulation , is a more appropriate framework.    Accelerate The Transition To Value-Based Care  Unleashing the power of data and giving patients and providers the tools they need to live better and work smarter is among the greatest challenges—and opportunities—of our era. A fee-for-service payment model hampers the exchange of data because health care providers and EHR vendors risk losing money as data flow more freely. Providers are disinclined to make it easy for their patients to switch to other providers and are not remunerated for the time they take in engaging patients using new data services. Some also fear increased liability if patient data they have recorded is made more accessible. At the same time, EHR vendors fear that increased data exchange threatens their installed base of customers, will more easily be able to switch to competitive services, whether they are offered by other EHR vendors or a new crop of health care technology service providers encompassing startups, technology companies, and other consumer companies from other industries that are now entering health care (such as Wal-Mart, for example).    Virtually every other industry has adopted technology more widely and successfully than health care, largely because it makes sense from a business perspective. If health care incentives depended upon better health outcomes, care providers and the infrastructure that supports them would have to figure out ways to share data, not only among providers, but with consumers, who play a critical role in shaping and maintaining their own health.    We therefore believe that accelerating the trajectory toward value-based care is the most essential step that policy makers, purchasers, and payers can take toward better health. It’s time to make a dramatic shift to a world in which patient data is no longer a closely held business asset, but a private (for use by the individual!) and public good. This is an effort many decades in the making, and it is worth doubling down on, right now. Original article HERE

Let’s get right to it: This is an apology letter to frontline clinicians. And a call to action. I’m a patient advocate, and I’ve spent most of the last 20 years fighting for patient- and family-centered care in national laws and regulations, and in local practice. Prioritizing the needs of patients and families above all else. It is meaningful work to which I feel deeply called, and it is hard work that has at times involved going toe-to-toe in opposition to the House of Medicine and various health care interest groups. I’m proud that collectively, consumer advocates like me have changed the national dialogue to prioritize patient voices. I’m especially proud to have helped shape the future of medicine via the Shared Principles of Primary Care , the way we define patient engagement and patient-led efforts to access to digital medical records. But I have regrets. Namely, I had no idea what working in this system was doing to you, our frontline clinicians — the humans we rely on for medical wisdom. Doctors, physician assistants, nurses, nurse practitioners, medical assistants, everyone. Yes, it’s true that paternalism persists. Yes, it’s true that none of my primary care practices in the past 20 years have remembered my name or made me feel they have my back. But now I see that when it feels like patients and clinicians are more adversaries than allies, it’s because the way the health care system is organized and financed is actually inhumane. So why this change of heart? Eighteen months ago, a primary care physician posed an intriguing question. He said: Clinicians are experiencing epidemic levels of burnout; patient dissatisfaction and lack of trust is at an all-time high. If it’s not working for either of us, why aren’t we organizing together to upend this hunk of junk? (Maybe not his exact words.) I wasn’t sure whether patients cared about burnout, or “joy” in medicine. After all, “doctors make six figures,” and we all had to learn how to use a computer. I wasn’t sure joy was something clinicians actually deserved when many patients were struggling to feel heard and respected in their exam rooms. I had the squinty-eyes of skepticism. But I was willing to explore it. And explore we did. Alongside another trusted patient advocate and a small group of experts, we developed a forum that brought frontline clinicians together with patients in their community for a three-hour facilitated conversation about the human impact of the health care system, and about the value of the clinician-patient relationship. We called it the 3rd Conversation , a nod to the idea of fusing the two separate conversations that patients and clinicians were having about their respective pain points in the system. In four very different communities – an HIV/AIDS clinic in Atlanta, primary care practices in Maryland and Massachusetts, and a health system in Pennsylvania — we watched and listened with fascination (and some fear) as interprofessional clinicians sat knee to knee with patients from their community /clinic. They talked –as people – about what they want from the system and how they feel about it, exploring insights and experiences light-bulb moments of realization that profoundly impacted them personally and professionally. They – and we – came to see each other in new ways. It felt therapeutic and eye-opening. It felt thrilling, and healing. And that’s how I came to know that I owed you an apology. 3rd Conversation events have taught me some important things that I hope will make you, clinicians, feel heard, and validated: Your patients care about you personally; they have a deep well of empathy for your human condition.You and your patients want the same things from the system: more time together, more human connection, more freedom.There is an opportunity here to reinvent the way we work together, and the clinician-patient relationship itself. Not just during our visits and encounters, but in work to address the root causes of our collective circumstances in service of our common aspirations. But there’s a catch: These feelings of bidirectional empathy, insight, and inspiration only come when you share your authentic self with patients. Whether that happens in the exam room or in an external forum, this is actually the source of your well-being and professional satisfaction. To put it bluntly: No one cares about your joy. They care about your pain. When you share this genuinely human and fundamentally emotive part of yourself, something special happens: Patients rise and respond from a different place within themselves to help, to understand, to heal. And it’s insanely inspiring. I also suspect that this is the place from which we can create larger scale, enduring change that addresses burnout and collective wellbeing once and for all. Why? Because you have real power. It may feel like all the agency is held by payers, regulators, and your C-suite. But You. Have. Power. And that power comes from sharing the very humanity you’ve been taught to hide, and which has been slowly eroding in this system. I see you. I get it now. Patient frustrations are caused by the same system properties that are burning you out, creating depression, and even suicidal ideation. Same system. Different conversations. If we are going to finally change this, it must be in a fundamentally different way than we ever have before — connecting and acting from a deeper, empathic place within ourselves. Less head. More heart. The place where we understand our needs, our common humanity, and our hopes. It means re-engineering how we engage decision-makers and policymakers from this same authentically human, empathetic place. Because if 3rd Conversation is any indication, once people access this part of themselves, their openness to change is infinite and immediate. That is the rocket fuel for the work ahead. Reinventing and rebuilding our relationships. I, for one, can’t wait to do this with you. Christine Bechtel is a patient advocate and president and chief strategist, X4 Health .

I’m a patient and consumer advocate who has dedicated my career to improving the health care system. I’ve encountered the good, the bad, and the ugly of our health care system, but I was still not prepared for what I heard in April 2016 when I attended my first national medical association conference and listened to a resident share his experience with severe depression. He spoke about a never-ending list of demands and constantly being overwhelmed.  He talked about loneliness and isolation.  With an openness that will forever be imprinted in my mind’s eye, he talked about his past thoughts of suicide. Tears streamed down my face as I listened to his story. I continued to be stunned as luncheon speakers cited staggering statistics about the anguish hiding in large swaths of the medical community.  I left the conference wondering how I could have been so unaware of this epidemic.  I have many friends and colleagues who are clinicians.  How could I not know how much pain our healers were experiencing? As it turns out, I was not the only patient in the dark about the pain many clinicians experience and the degree to which the epidemic of physician and clinician “burnout” is negatively impacting the profession.  When I returned home, I immediately dialed family, friends, and colleagues all of whom were universally unaware of even the term “physician burnout,” an epidemic apparently hiding in plain sight. Here are some facts everyone should know: Each year, more than 1 million Americans lose their doctors to suicide.Physicians struggle with one of the highest suicide rates among any profession.A doctor dies by suicide every day in the United States. These truths beg the question: “How is this possible, and why isn’t anyone doing anything?” In the last two years, I’ve watched as medical societies launch well-being taskforces (I participate in one) and medical systems convene conferences focused entirely on physician well-being.  These efforts represent significant progress and yet today — on the second annual National Physician Suicide Awareness Day (NPSA) — I’m left wondering: “Are these efforts enough and how can patients be part of solutions?” The “burnout” epidemic remains practically a secret to many outside the profession.  I get it.  It’s not unusual for subgroups to circle the wagons to hide things they perceive as shameful. And, given the culture of medicine, which requires clinicians to subsume their own needs to focus on their patients, it’s not surprising.  But, I’m here to say: It’s shortsighted.  The medical community is making a mistake in not making their pain more visible. In a recent New Yorker article titled “Why Doctors Should Organize” Eric Topol notes that “doctors feel despair about their appalling working conditions and the deteriorating doctor-patient relationship” and asks, “why aren’t doctors standing up for themselves and their patients?” I have a different question: Why aren’t doctors and patients working together to stand up for each other? As a patient advocate, I know how frustrated patients are with the health care system. We’re tired of 15-minute office visits, we want health insurance plans to get out of our exam rooms, and we’re yearning to connect and partner with our health care providers.  Sound familiar? From my read of the well-being literature, these frustrations mirror those of health care providers and are, in part, to blame for clinician burnout. This point deserves emphasis and repeating: Patients and providers want the same thing. So, where’s the disconnect? Eighteen months ago, I launched a project with my colleagues called The 3rd Conversation , which gives patients and clinicians a chance to sit knee to knee and share their respective experiences in the health care system. In these conversations I’ve watched as clinicians share deep wounds- for example, feeling like a failure when patients don’t get better or when their clinical recommendations are rejected by insurance plans that are based on “cookie-cutter” medicine.  Time and again, I’ve witnessed patients respond with empathy and compassion. Likewise, as patients have shared their painful stories of feeling like a number in the health care system and their sense of loss at the inability to build continuous relationships with health care providers, clinicians have offered support and commiseration. Just last week during a 3rd Conversation event, a patient and clincian spontaneously hugged, and the patient shared that the clinician felt like family. They had only met one hour prior. During these conversations, patients and clinicians recognize that they share common goals and have similar needs, and they begin to see that they are potential allies in advocating for a system that better meets those needs. Let me be clear: I’m not suggesting that clinicians start sharing their personal pain with patients during office visits. In fact, in recent focus groups conducted by the 3rd Conversation, patients couldn’t fathom the statistics shared about clinician depression and suicide and in some cases questioned the numbers.  And, yes, they were afraid of what the statistics might mean for their quality of care. But, I’m very concerned, that our healers are trying to change the system on their own, especially if they are still insignificant personal pain. Most importantly, I shudder that their efforts will take too long and result in more clinicians jumping off of hospital roofs to escape their depression. It’s not enough to share the statistics, but patients do understand clinicians’ pain when they hear it from them directly in a facilitated dialogue. And, I’m hard-pressed to believe that if patients truly knew the pain clinicians were in that they wouldn’t be motivated to help. As a community organizer, I’ve seen first-hand what can be accomplished when a group of passionate and committed individuals work together. There’s no question that there’s strength in numbers.  What if instead of trying to change the system alone, patients and clinicians worked together?  It will require clinicians and the medical community to pull back the curtain on their frustrations with the system and on physician depression and suicide, but if history has taught us anything, it is that silence can be lethal. So, my invitation to one and all is that we replace both silence and in-group conversations with a commitment to join a patient-clinician movement to design a system that better meets both of our needs. Jennifer M. Sweeney is a patient advocate and co-founder, x4-health . Original https://www.kevinmd.com/blog/2019/09/physician-suicide-awareness-day-where-are-the-patients.html