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Category: Patients

Our Cancer Support Group On Facebook Is Trapped

Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups

By ANDREA DOWNING

Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.

As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.

This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.

Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.

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Pulling Care Out of Hospital—By Phone, Ambulance, and Good Ol’ House Calls.

By REBECCA FOGG

In the 20th century, hospitals completed their transformation from the hospice-like institutions of the Middle Ages, into large, gleaming centers of advanced medical expertise and technology that save and improve lives every day. But an unintended consequence of hospitals’ dazzling capabilities is a staggering cost burden that’s proving toxic to the American economy.

Today, hospital care accounts for approximately 33% of the US’ $3.5 trillion annual health care expenditures, according to CMS. The drivers of hospital costs are complex and hard to tackle, including (but not limited to) market consolidation that enables price hikes, heavy administrative burdens, expensive technology and patient usage patterns.

In The Innovator’s Prescription, Clayton Christensen et al. explained another important driver of high hospital care costs: conflation under one roof of business models designed to address very different needs—such as the need for diagnosis of unique, complex conditions and experimental treatments, versus that for highly standardized services (for instance, some surgical procedures). This common phenomenon makes optimization of either business model very difficult, and thus drives up overhead costs.

One solution to this seemingly intractable problem is to make home and community the default locations for care, where in many circumstances it can be provided less expensively, more conveniently, and more effectively than in a hospital. Fortunately, business model innovation toward this end is gaining traction.

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No Quick Fix for the Culture of Prescribing that Drives Medication Overload

By THERESA BROWN, RN

In my mid-twenties, I was twice prescribed the common antihistamine Benadryl for allergies. However, my body’s reaction to the drug was anything but common. Instead of my hives fading, they erupted all over my body and my arms filled with extra fluid until they were almost twice normal size. I subsequently described my experience to a new allergist, who dismissed it as “coincidence.”

When I later became a nurse, I learned that seemingly “harmless” medications often cause harm, and older adults are particularly vulnerable. Every year, Americans over age 65 have preventable “adverse drug events” (ADEs) that lead to 280,000 hospital stays and nearly 5 million outpatient visits. The Lown Institute in Boston draws attention to this underrecognized problem in their recent report, Medication Overload: America’s Other Drug Problem. Policymakers, patients, and health professionals must act, because over the next decade, medication overload is predicted to cause 4.6 million hospitalizations of older Americans and 150,000 premature deaths.

Nearly half of all older adults take at least five prescription drugs, a 300 percent increase from 25 years ago. The more drugs we take, the likelier it is that one of them, or some combination, will cause serious harm. When you add in non-prescription medications, including over-the-counter drugs like ibuprofen and Tylenol, as well as vitamins and herbal supplements, the potential for harm only goes up.

I’ve seen this in my work. It is not unusual for elderly, very ill patients on hospice to have prescriptions for 20 to 30 drugs. Several of their medications may treat the same problem, amplifying any serious side effects. Blood pressure medications provide a good example. As older patients become more debilitated, lose weight, and are taxed by other health issues, the effect of these medications can intensify, severely lowering blood pressure, and causing the patients to fall. Indeed, if I am following up with a hospice patient who has fallen, the first thing I check is their prescription medications for hypertension.

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Trauma-Informed Primary Care

Samyukta Mullangi

By SAMYUKTA MULLANGI MD, MBA, DANIEL W. BERLAND MD, and SUSAN DORR GOOLD MD, MHSA, MA

Jenny, a woman in her twenties with morbid obesity (not her real name), had already been through multiple visits with specialists, primary care physicians (PCPs), and the emergency department (ED) for unexplained abdominal pain. A plethora of tests could not explain her suffering. Monthly visits with a consistent primary care physician also had little impact on her ED visits or her pain. Some clinicians had broached the diagnosis of functional abdominal pain related to her central adiposity, and recommended weight loss. This suggestion inevitably led her to become defensive and angry.

Though our standard screen for safety at home had been completed long ago, I wanted to probe further, knowing that many patients with obesity, chronic pain and other chronic conditions have suffered an adverse childhood – or adulthood – experience (ACE). Yet, I hesitated. Would a busy primary care setting offer enough latitude for me to ask about a history of trauma when it can occur in so many forms, in so many ways and at different times of life? Furthermore, suppose she did report a history of trauma or adverse experience. What then? Would I be able to help her?

Nonetheless, I began: “Jenny, many patients with symptoms like yours have been abused, either emotionally, physically, or sexually, or neglected in their past. Sometimes they have suffered loss of a loved one, or experienced or witnessed violence. Has anything like this ever happened to you?”

This yielded our first breakthrough. Yes, she had experienced neglect, with parents who were separated for much of her childhood, and then later divorced. She had seen her father physically abuse her mother. With little parental oversight, she had engaged in drug and alcohol use throughout her teenage years. But, she wanted to be sure we understood that this was all behind her. She had gotten an education, was in a committed relationship, and had a stable job as a teacher. That part of her life was thankfully now closed.

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Financial Toxicity is Hurting my Cancer Patients

By LEILA ALI-AKBARIAN MD, MPH

As news of Tom Brokaw’s cancer diagnosis spreads, so does his revelation that his cancer treatments cost nearly $10,000 per day. In spite of this devastating diagnosis, Mr. Brokaw is not taking his financial privilege for granted.  He is using his voice to bring attention to the millions of Americans who are unable to afford their cancer treatments.

My patient Phil is among them. At a recent appointment, Phil mentioned that his wife has asked for divorce. When I inquired, he revealed a situation so common in oncology, we have a name for it: Financial Toxicity.  This occurs when the burden of medical costs becomes so high, it worsens health and increases distress.  

Phil, at the age of 53, suffers with the same type of bone cancer as Mr. Brokaw.  Phil had to stop working because of treatments and increasing pain. His wife’s full time job was barely enough to support them. Even with health insurance, the medical bills were mounting. Many plans require co-pays of 20 percent or more of total costs, leading to insurmountable patient debt.  Phil’s wife began to panic about their future and her debt inheritance. In spite of loving her husband, divorce has felt like the only solution to avoiding financial devastation. 

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Patients Win When Payers and Providers Speak the Same Language

By CECI CONNOLLY

Discouraging headlines remind us daily of the ugly battles between payers and providers. Fighting for their slice of the $3.5 trillion health care pie, these companies often seem to leave the consumer out of the equation.  But it is not the case across the board. Our latest research documents that when doctors and health plans drop their guards, align incentives and focus on the mutual goal of delivering the best possible care, patients win.

For example, when SelectHealth in Utah partnered with obstetricians and refused to pay for medically unnecessary — often  dangerous — early inductions of labor, procedure rates dropped from 28% to zero, leading to shorter labors, fewer C-sections and $2.5 million in annual savings for all. When Kaiser Foundation Health Plan execs collaborated with Permanente doctors around opioid safety, prescriptions for the often-deadly drugs dropped 40%. And, when Security Health Plan in Wisconsin enlisted physicians and surgeons to develop a new outpatient surgery and rehab center, health outcomes improved; patient satisfaction jumped to 98%; and they saved $4.7 million in the first two years.

These productive partnerships occur in multiple communities across the nation as illustrated in in “Accelerating Adoption of Evidence-Based Care: Payer-Provider Partnerships,” a new report by the Alliance of Community Health Plans. With funding from the Patient-Centered Outcomes Research Institute (PCORI), the 18-month project uncovered five best practices in effective collaboration for health plans:

  1. Build consensus and commitment to change;
  2. Create a team that includes the necessary skill sets, perspectives and staff roles;
  3. Customize education, tools and access to specialized knowledge that the audience needs;
  4. Share timely and accurate data and feedback in a culture of transparency, accountability and healthy competition; and
  5. Align financial investments with clinical and patient experience goals.

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Innovators Worth Watching: Hennepin Health ACO

By REBECCA FOGG

As U.S. providers continue their slow but steady march away from fee-for-service reimbursement and toward value-based payments, they’re increasingly seeking means of addressing patients’ health-related social needs. That’s because social determinants of health—life circumstances including socioeconomic status, housing, education, and employment—are estimated to have at least twice the impact on risk of premature death than health care. So addressing them is an important part of value-based strategies aiming to improve health while reducing health care costs.

Hennepin Health, a safety-net Accountable Care Organization (ACO) serving Medicaid patients in Minneapolis, Minnesota, is an encouraging example of the trend. Hennepin Health’s ACO is a partnership between the county’s local Human Services and Public Health Department, a local teaching hospital, a Medicaid managed care health plan, and a Federally Qualified Health Center. Its innovative care model is designed to meet the unique needs of the partners’ shared, “high-risk” members, whose complex combination of issues—such as mental illness, addiction, homelessness and/or other hallmarks of social deprivation—often prevent them from accessing or receiving appropriate care through the traditional health system.

The ACO is staffed by an integrated care team comprised of physicians, nurses, pharmacists, social workers and community health workers. Unlike traditional care processes, which often only involve medical assessment, Hennepin Health’s begins with an assessment of members’ social needs, like housing and food insecurity, or lack of transportation and unemployment, so that its care team can tackle those barriers to health in conjunction with members’ medical problems. And throughout members’ care, the team strives to develop and maintain a trusting relationship with members, many of whom have been let down by traditional health care, so that they can continue to identify and assist with more health and social needs over time.

Results thus far has been impressive—according to a Commonwealth Fund case study, the ACO’s medical costs fell an average of 11% per year between 2012 and 2016. And, between 2012 and 2013, its members’ emergency room visits decreased by approximately 9%, with hospital admissions remaining flat and outpatient visits increased by 3.3%. Assuming its results have continued on the same trajectory (we could not find more recent figures), Hennepin Health’s innovative care model shows significant promise.

But does it have the potential to disrupt America’s traditional, episodic, acute care delivery model? We put it to the test with six questions for identifying a Disruptive Innovation.

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Health Care Must Open More Doors to Mental Health Patients

By ARPAN WAGHRAY, MD and BENJAMIN F. MILLER, PsyD

Benjamin F. Miller

Arpan Waghray

If someone we love has a physical ailment, we can list a variety of places for them to seek care: a clinician’s office, a pharmacy, an urgent care clinic, a school health clinic, an emergency department — the list goes on.

And, in every case, we would feel confident the clinicians in those places would know how to handle the case — or at least know where to send the patient if they need more intensive or specialized care.

But, sadly, the same isn’t true for a loved one with a mental health or substance misuse need, even thought mental health problems are more prevalent than many physical conditions.

As deaths of despair from drug or alcohol misuse or suicide continue to rise, we need a comprehensive, coordinated “no wrong door” approach that fully integrates mental health into the health care system and beyond. We need to transform our clinical practice, creating more options for care and putting mental health and substance use patients’ best interests first. Policy and payment reform must happen to make this new vision of care possible.

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Our Dead on Every Shore

By MAYURA DESHPANDE 

I once made a serious error. The patient had taken an overdose of paracetamol, but because I was single-handedly covering three inpatient acute psychiatric wards due to sickness of two other trainees which medical HR had been unable to cover, with a lot of agency nurses who did not know any of the patients well at all, and also because this patient frequently said she had taken overdoses when she had not, and declined to let me take bloods to test for paracetamol levels, I believed she was crying wolf. She collapsed several hours later, and died. I was overwhelmed with feelings of guilt, inadequacy, but also fear – was this the end of my career? I was a trainee psychiatrist at the time – and was immensely fortunate in that my supervising consultant was robust in his defence of me, supported me, whilst fronting the complaint from the patient’s family and attending the inquest. He had been covering two outpatient clinics himself while I was on the ward.

The patient was only 26 years old. Her parents were very angry with me, and not unreasonably so; at the time, it seemed to me that they wanted me to suffer. Twenty years later, I believe they wanted to understand how I made the decision I did. Eventually, the consultant arranged for me to meet the parents. They were very kind to me, all of them, I realise that now. I wasn’t able to give them the answers they wanted. I just cried and said I was sorry.

The mother sent the consultant a letter afterwards which he gave me when I was about to complete that training placement. I did not read it for many months. When I did, I cried. The mother described her daughter’s childhood, the family’s loss, and her own incomprehension that the NHS – which she and generations of her family had venerated as a great institution – could have failed her child. It said very little about me, certainly didn’t seek to blame me, but said a few times that she wanted justice for her daughter. It was an exploration of grief by a bereft mother.

I often think about the mother – I cannot recall the face of the 26 year old patient – but remember perfectly well the mother, who said very little, didn’t even cry, leaving her husband to talk incoherently about justice and a referral to the GMC and the police (they did not do any of these things). And I often ponder the nature of justice they wanted. This was well before the advent of Duty of Candour and rigorously completed serious incident investigations.

Did they get justice? The coroner returned a verdict of suicide, but failed to acknowledge the systemic problems of lack of staff, merely noting that there had a “gap in clinical assessment”. It was not untrue, yet I experienced it as unfair. The consultant reminded me that I was fortunate that the family had not made more fuss. So I let it be. Until the case of Dr Bawa-Garba.

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ONC’s Proposed Rule is a Breakthrough in Patient Empowerment

By ADRIAN GROPPER

Imagine solving wicked problems of patient matching, consent, and a patient-centered longitudinal health record while also enabling a world of new healthcare services for patients and physicians to use. The long-awaited Notice of Proposed Rulemaking (NPRM) on information blocking from the Office of the National Coordinator for Health Information Technology (ONC) promises nothing less.

Having data automatically follow the patient is a laudable goal but difficult for reasons of privacy, security, and institutional workflow. The privacy issues are clear if you use surveillance as the mechanism to follow the patient. Do patients know they’re under surveillance? By whom? Is there one surveillance agency or are there dozens in real-world practice? Can a patient choose who does the surveillance and which health encounters, including behavioral health, social relationships, location, and finance are excluded from the surveillance?

The security issues are pretty obvious if one uses the National Institutes of Standards and Technology (NIST) definition of security versus privacy: Security breaches, as opposed to privacy breaches, are unintentional — typically the result of hacks or bugs in the system. Institutional workflow issues also pose a major difficulty due to the risk of taking responsibility for information coming into a practice from uncontrolled sources. Whose job is it to validate incoming information and potentially alter the workflow? Can this step be automated with acceptable risk?

It’s not hard to see how surveillance as the basis for health information sharing would be contentious and risk the trust that’s fundamental to both individual and public health. Nowhere is this more apparent than in the various legislative efforts currently underway to expand HIPAA to include behavioral health and social determinants of health, preempt state privacy laws, grant data brokers HIPAA Covered Entity status, and limit transparency of how personal data is privately used for “predictive analytics”, machine learning, and artificial intelligence.

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