Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 493 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:http://oc1dean.blogspot.com/2010/11/my-background-story_8.html

Friday, May 26, 2017

6 Ways You Can Reduce Your Risk of Suffering a Stroke - National Stroke Association

Another lazy fucking press release from the NSA. They obviously care not one whit about stroke survivors. I don't see them doing one damn thing to solve all the problems in stroke. They must not even have two functioning neurons to rub together. Why is Stroke in their name anyway? False advertising.
http://www.cheatsheet.com/health-fitness/reduce-risk-suffering-stroke.html/?ref=YF&yptr=yahoo



We all know our brain is one of the most important organs in our body (it does control bodily functions and memory, after all), yet we rarely ever talk about how serious strokes can be. Maybe it’s because most of us don’t truly understand what these events actually are. Time for a primer.
According to the National Stroke Association, a stroke occurs when blood flow to one area of the brain gets cut off. This stops the flow of oxygen, leading to cell death. Depending on what part of the brain is affected, a person may lose control of certain muscles and may have difficulty remembering things. Because it’s the fifth leading cause of death in the U.S., you should do everything you can to reduce your risk. Make sure to follow these tips to lower your chances of having a stroke.

1. Increase your fruit and vegetable intake

bucket of vegetables
A diet rich in produce is good for just about everything, including minimizing your stroke risk. | iStock.com
According to an analysis, eating more fruits and vegetables has been linked to reducing the risk of stroke. The analysis included 20 different studies, which compiled data from over 700,000 people and close to 17,000 strokes. The article mentions that for every 200 grams of fruit eaten a day, the risk of stroke decreased by 32%. For every 200 grams of vegetables, it decreased by 11%. Findings were consistent for both men and women of various ages. In other words, eat up.

2. Avoid high-cholesterol foods

Raw steak high in saturated fat
Consider cutting back on red meat. | iStock.com
The National Stroke Association mentions having high cholesterol may contribute to stroke. When there’s a lot of fatty substances in the blood, it can lead to plaque buildup in the arteries. We often associate this with heart attack, but it may also lead to a stroke. To lower harmful fat substances in the blood, the American Heart Association says to avoid foods like full-fat dairy products, red meats, and foods high in saturated fat, which contribute to high cholesterol levels in the body. Genetics also play a large role, so be sure to discuss family history of high cholesterol with your doctor.

3. Get moving

woman doing jumping jack exercises
Even jumping jacks ill do the trick. | iStock.com/Nektarstock
Most of us think about working out as a way to keep our weight in check, but that’s just one part of the picture. Mayo Clinic says regularly working up a sweat can provide health benefits by making the heart stronger. And it may take up to three months for exercise to be effective, so it’s important to make it a regular habit. Aim for 150 minutes of moderate-intensity aerobic activity per week, plus some strength training.
Where should you start? It really depends on your preferences. If you despise running, for example, don’t try to train for a marathon. Instead, focus on something you actually enjoy. Maybe it’s tennis or maybe it’s hitting the pool. Choosing something that you actually like to do means you’re a lot more likely to make it a habit.

4. Lower your blood pressure

elements of blood pressure
Make sure you’re keeping track of your numbers. | iStock.com
By lowering high blood pressure, you can reduce risk of stroke and other life-threatening issues like kidney failure and heart attack. According to the National Stroke Association, high blood pressure causes your heart to work harder to pump blood throughout your body. When this happens, major organs like the brain become damaged because of weakened blood vessels. If high blood pressure is not regulated, risk of stroke may increase by four to six times. A few ways to lower blood pressure include following a diet low in fat and sodium and limiting alcohol intake.
You should always start with diet and exercise, which we’ve covered, but it may not be enough for some people. If efforts to eat right and regularly work up a sweat aren’t helping your numbers enough, it’s time to talk about other options with your physician. He or she may prescribe medication to help. For a bit of background on what your discussion might entail, check out the different classes of options and some examples of each over at Healthline.

5. Say no to cigarettes

wood deck with an ashtray filled with cigarette butts
Still smoke? It’s time to quit. | iStock.com
The National Institute of Neurological Disorders and Stroke says smoking can double chances of ischemic stroke and increase the risk of hemorrhagic stroke by up to four times. This may be because smoking causes plaque buildup in the artery that delivers blood from the heart to the brain. If that flow gets cut off, you’re in major trouble. Even if you only occasionally smoke, it’s best to give up the habit entirely. And bonus, you’ll save some money.


Thursday, May 25, 2017

Stroke survivors come back strong - National Stroke Association event

WOW, just FUCKING WOW! Aims to inspire hope in stroke survivors. If the NSA would get off their fucking asses and solve the problems in stroke survivors wouldn't have to hope. They would be able to use proven therapies and interventions that get you to 100% recovery. But that won't occur until the NSA is destroyed and recreated as a great stroke association.
http://littletonindependent.net/stories/stroke-survivors-come-back-strong,249045

Kyle Harding
Posted
Stroke survivors and their supporters celebrated their recovery and raised money on May 22 at the Comeback Trail 5K at Hudson Gardens & Event Center in Littleton.
The run is hosted by the National Stroke Association and is part of its Come Back Strong campaign, which aims to inspire hope in stroke survivors.
Hudson Gardens was the site of the first Comeback Trail 5K last year, and now eight are held around the country.

Gut Microbiota Potential for a Unifying Hypothesis for Prevention and Treatment of Hypertension

This would be cool because of the side effects of hypertension medications.
http://circres.ahajournals.org/content/120/11/1724?etoc=
YanFei Qi, Seungbum Kim, Elaine M. Richards, Mohan K. Raizada, Carl J. Pepine
Despite major advances in pharmacological and device-based therapies, systemic hypertension (HTN) continues to be the major, modifiable risk factor for most cardiovascular disease and a leading cause of morbidity and mortality. Treatment resistant HTN (RH) is present in ≈15% to 20% of hypertensive patients, with few treatment options. These facts provide an opportunity to develop novel hypotheses to advance this field.
Over 60 years ago, Irvine Page1 proposed a mosaic theory where interplay of multiple factors integrate to increase blood pressure (BP). This fostered establishment of cellular, molecular, and physiological mechanisms altered in HTN. However, how these diverse factors integrate to impair BP control remains a challenge. Furthermore, why some factors are prohypertensive in one individual and not in another, and where prohypertensive signals originate, remains an enigma.
In this Viewpoint, we propose that the gut and gut microbiota could be one missing link and provide a potential unifying concept. We summarize most recent evidence for involvement of gut microbiota in BP control and HTN. We present our thoughts on the current state and relevant knowledge gaps to be addressed to determine whether targeting gut microbiota and related pathology would be a next frontier in HTN therapeutics.

Are HTN or RH Associated With a Unique Gut Microbial Signature?

Gut dysbiosis and microbial functions contribute to pathological effects beyond the gastrointestinal system. Gut microbiota play a role in BP regulation, and gut dysbiosis has been observed in multiple animal models of HTN.25 Our group was among the first to document HTN-associated gut dysbiosis and an increased Firmicutes/Bacteroidetes ratio.2,3 This was associated with a decrease in acetate- and butyrate-producing bacteria and an increase in the lactate-producing bacteria. High-fiber diet and acetate supplementation correct gut dysbiosis, increase the abundance of acetate-producing bacteria, and are associated with lower BP in DOCA-salt mice.5 Stroke-prone spontaneously hypertensive rats exhibit gut dysbiosis, and fecal microbiota transplant (FMT) from stroke-prone spontaneous hypertensive rats to Wistar–Kyoto normotensive rats increases BP.4 Furthermore, we noted that HTN is associated with profound pathological changes in the gut and increases brain–gut transmission in animal models of HTN.6
Microbial dysbiosis has also been observed in patients with high BP.2,3 Interestingly, subjects with HTN or pre-HTN demonstrate similar characteristic changes in gut microbiota composition.7 In a RH patient, antibiotic treatment resulted in BP under control with only an angiotensin-converting enzyme inhibitor, suggesting possible involvement of gut microbiota in the pathogenesis of RH as antibiotics alter gut microbiota.8 Future work will be needed to determine whether a unique microbial signature in the gut, gut pathology, and increased brain–gut–bone marrow connection are present in patients with RH.

Oral Abstracts from 3rd European Stroke Organisation Conference (ESOC 2017)

Useless, I don't see anything that addresses the neuronal cascade of death or any useful rehab strategies. Proves once again there is no strategy to get all stroke survivors 100% recovered.
http://journals.sagepub.com/doi/full/10.1177/2396987317705236

THE NORWEGIAN TENECTEPLASE STROKE TRIAL (NOR-TEST): RANDOMISED CONTROLLED TRIAL OF TENECTEPLASE VS. ALTEPLASE IN ACUTE ISCHAEMIC STROKE

 

EFFICACY OF EARLY COGNITIVE-LINGUISTIC TREATMENT FOR APHASIA DUE TO STROKE; A RANDOMISED CONTROLLED TRIAL (RATS-3)

 

CLOSURE OF PATENT FORAMEN OVALE, ORAL ANTICOAGULANTS OR ANTIPLATELET THERAPY TO PREVENT STROKE RECURRENCE (CLOSE): A RANDOMIZED CLINICAL TRIAL

 

PROBUCOL FOR PREVENTION OF CARDIOVASCULAR EVENTS IN ISCHEMIC STROKE PATIENTS WITH HIGH RISK OF CEREBRAL HEMORRHAGE (PICASSO) STUDY: A MULTICENTER, RANDOMIZED CONTROLLED TRIAL

 

PROGNOSTIC AND TREATMENT IMPACT OF PENUMBRAL IMAGING IN POOLED ANALYSIS OF RANDOMIZED TRIALS OF ENDOVASCULAR STENT THROMBECTOMY

 

TESPI(THROMBOLYSIS IN ELDERLY STROKE PATIENTS IN ITALY): RANDOMIZED CONTROLLED TRIAL OF ALTEPLASE VERSUS STANDARD TREATMENT IN PATIENTS AGED >80 YEARS WITHIN 3HRS AFTER STROKE ONSET

 

OFF LABEL USE OF ALTEPLASE FOR ACUTE ISCHEMIC STROKE (AIS) IN PATIENTS OVER 80 YEARS OF AGE: INDIVIDUAL-PATIENT-DATA META-ANALYSIS OF EIGHT TRIALS

 

LOW-DOSE VERSUS STANDARD-DOSE ALTEPLASE BY AGE, ETHNICITY, AND SEVERITY OF ACUTE ISCHAEMIC STROKE: THE ENCHANTED TRIAL

 

THROMBOLYSIS IMPLEMENTATION IN STROKE (TIPS) TRIAL: A CLUSTER RANDOMISED CONTROL TRIAL OF IMPLEMENTATION STRATEGIES FOR INTRAVENOUS THROMBOLYSIS

 

CHARACTERISTICS, MANAGEMENT AND RESPONSE TO TREATMENT IN CHINESE VS. NON-CHINESE PARTICIPANTS IN THE ENCHANTED TRIAL

 

THE NORWEGIAN SONOTHROMBOLYSIS IN ACUTE STROKE STUDY (NOR-SASS). A RANDOMIZED CONTROLLED STUDY OF CONTRAST-ENHANCED SONOTHROMBOLYSIS

 

INTRAVENOUS THROMBOLYSIS IN PATIENTS WITH STROKE UNDER RIVAROXABAN USING DRUG SPECIFIC PLASMA LEVELS – EXPERIENCE WITH A STANDARD OPERATION PROCEDURE IN CLINICAL PRACTICE

 

PROFESSIONAL GUIDELINE VERSUS PRODUCT LICENCE SELECTION FOR TREATMENT WITH IV THROMBOLYSIS: COMPLIANCE WITH PRODUCT LICENCES IS HIGHEST IN LOWER EFFICIENCY SITES AND RESTRICTS THROMBOLYSIS USAGE

 

OUTCOME AFTER ISCHEMIC STROKE IN PATIENTS OVER 80 YEARS TREATED WITH IV THROMBOLYSIS IN THE 3–4.5H COMPARED TO 3H TIME WINDOW: RESULTS FROM SITS-ISTR

 

NON-VITAMIN-K-ANTAGONIST ORAL ANTICOAGULANTS VERSUS WARFARIN IN PATIENTS WITH ATRIAL FIBRILLATION AND PREVIOUS STROKE OR TIA: AN UPDATED SYSTEMATIC REVIEW AND META-ANALYSIS OF RANDOMIZED CONTROLLED TRIALS

 

EFFECTIVENESS OF DIRECT ORAL ANTICOAGULANTS IN A POPULATION STUDY OF INCIDENT ATRIAL FIBRILLATION

 

PREDICTING RISK OF MAJOR BLEEDING IN PATIENTS WITH ATRIAL FIBRILLATION TREATED WITH ORAL ANTICOAGULATION AFTER TIA OR STROKE: EXTERNAL VALIDATION OF RISK SCORES

 

EARLY RECURRENCE AND MAJOR BLEEDING IN PATIENTS WITH ACUTE ISCHAEMIC STROKE AND ATRIAL FIBRILLATION TREATED WITH DIRECT ORAL ANTICOAGULANTS. THE RAF-DOAC STUDY

 

EVALUATING THE EFFECTIVENESS AND SAFETY OF NOVEL ORAL ANTICOAGULANTS COMPARED WITH VITAMIN-K ANTAGONISTS

 

POPULATION-BASED STUDY OF PROGNOSIS OF BRIEF EPISODES OF ATRIAL FIBRILLATION ON 5-DAY HOME CARDAIC RHYTHM MONITORING AFTER TIA AND ISCHAEMIC STROKE

 

PILOT STUDY OF CARDIAC MAGNETIC RESONANCE IMAGING IN EMBOLIC STROKE OF UNDETERMINED SOURCE (MR-ESUS)

 

COMPARATIVE EFFECTIVENESS OF NON-VITAMIN K ANTAGONIST ORAL ANTICOAGULANTS AND WARFARIN IN THE SCOTTISH ATRIAL FIBRILLATION POPULATION: THE VALUE OF REAL WORLD EVIDENCE

 

PREDICTIVE FACTORS OF STROKE RECURRENCE IN PATIENTS WITH ISCHEMIC STROKE DUE TO ATRIAL FIBRILLATION

 

OPTIMAL TIMING TO START RIVAROXABAN ADMINISTRATION TO PREVENT RECURRENT EMBOLISM IN ACUTE STROKE PATIENTS WITH NONVALVULAR ATRIAL FIBRILLATION (NVAF): THE RELAXED STUDY

 

NURSE-LED, TELEPHONE-BASED, SECONDARY PREVENTIVE FOLLOW-UP AFTER STROKE OR TIA IMPROVES BLOOD PRESSURE AND LDL CHOLESTEROL: THREE-YEAR RESULTS FROM THE RANDOMIZED CONTROLLED NAILED STROKE TRIAL

 

TICAGRELOR VERSUS ASPIRIN IN ACUTE EMBOLIC STROKE OF UNDETERMINED SOURCE (ESUS)

 

PRIMARY RESULTS OF EBBINGHAUS, A COGNITIVE STUDY OF PATIENTS ENROLLED IN THE FOURIER TRIAL

 

A CULTURALLY-TAILORED, SKILLS-BASED INTERVENTION TO REDUCE BLOOD PRESSURE IN A MULTI-ETHNIC GROUP OF MILD/MODERATE STROKE SURVIVORS WITH HYPERTENSION: RESULTS FROM THE DESERVE TRIAL

 

SECULAR TRENDS IN PROCEDURAL STROKE OR DEATH RISKS OF STENTING VERSUS ENDARTERECTOMY FOR SYMPTOMATIC CAROTID STENOSIS – A POOLED ANALYSIS OF RANDOMISED TRIALS

 

RESTENOSIS AFTER STENTING VERSUS ENDARTERECTOMY FOR SYMPTOMATIC CAROTID STENOSIS AND ITS RELATIONSHIP WITH RECURRENT STROKE IN THE RANDOMISED INTERNATIONAL CAROTID STENTING STUDY (ICSS)

 

ENDOVASCULAR TREATMENT VERSUS ENDARTERECTOMY FOR CAROTID ARTERY STENOSIS: RESULTS FROM THE UPDATED SYSTEMATIC COCHRANE REVIEW

 

THE EVOLUTION OF CAROTID INTERVENTION: SECULAR TRENDS IN STENT TYPE, CEREBRAL PROTECTION DEVICES AND MEDICATION IN ACST-2, A LARGE INTERNATIONAL RCT COMPARING SURGERY WITH STENTING


















































































 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Can coffee consumption lower the risk of Alzheimer's disease and Parkinson's disease? A literature review

Why the fuck a literature review? Did these earlier ones not settle the questions? And you are hoping that doctors read this article when they have ignored all the other ones? What fantasy world do you live in?

Coffee May Lower Your Risk of Dementia Feb. 2013

 

Drinking Coffee Can Lower Alzheimer's Risk By 20%, All It Takes Is 3 Cups A Day Dec. 2014 

How coffee protects against Parkinson’s Aug. 2014


https://www.termedia.pl/Can-coffee-consumption-lower-the-risk-of-Alzheimer-s-disease-and-Parkinson-s-disease-A-literature-review,19,28680,0,1.html

Regina Wierzejska

Arch Med Sci 2017; 13, 3: 507–514
View full text
Get citation
 
In light of the fact that the number of elderly citizens in society is steadily increasing, the search for dietary factors which might prolong mental agility is growing in significance. Coffee, together with its main ingredient, caffeine, has been the focus of much attention from various researchers, as data on its beneficial effects on human health continue to accumulate. Most reports indicate that moderate coffee consumption may in fact lower the risk for common neurodegenerative conditions, i.e. Alzheimer’s and Parkinson’s diseases. Regardless, due to their complex pathogenesis as well as methodology of scientific research, the exact impact of coffee consumption remains to be fully elucidated. At present, it seems safe to inform the general public that coffee drinkers need not fear for their health. Possibly, in the future experts will recommend drinking coffee not only to satisfy individual taste preferences but also to decrease age-related mental deterioration.


Measuring Value Based On What Matters To Patients: A New Value Assessment Framework

If every single one of your stroke patients doesn't say 100% recovery then your medical team is influencing the patients answer. Either directly or indirectly. Nobody wants to be disabled so stop with the dumbing down of recovery possibilities.
http://healthaffairs.org/blog/2017/05/23/measuring-value-based-on-what-matters-to-patients-a-new-value-assessment-framework/
We spend 18 percent of our national gross domestic product on health care. As health care spending continues to grow and as we appropriately drive the health care system toward a payment system that rewards value instead of volume, it is imperative that we promote conversations on how to define value. To do this, it is critical that we first answer the question: value to whom?
Value in health care can mean different things to different stakeholders. Payer priorities may not match up with manufacturer concerns, and both may assess value entirely differently than public health entities. However, no matter which of these stakeholders is measuring value, it’s important that value assessments always robustly consider and measure what matters most to the ultimate consumers of health care: patients.
The patient perspective on value is of particular importance now, as patients are responsible for more and more of the costs of their care. Today, more than 1 in 4 Americans report facing challenges paying for their medical bills and about 79 percent of cancer patients report moderate to catastrophic financial burden related to their care. Low-income families often spend more than 20 percent of their after-tax income on out-of-pocket health care spending, even when enrolled in low- or no-deductible plans.
Not surprisingly, a recent Kaiser Family Foundation poll found that two-thirds (67 percent) of Americans, irrespective of political affiliation, feel that lowering out-of-pocket costs for health care should be a top priority for President Donald Trump and Congress. But despite the drive toward value-based health care reimbursement and patients’ ever increasing financial stake in their own health care treatment, many traditional value assessment tools fail to consider value from the patient’s perspective.
Recently, a Health Affairs Blog post from the National Pharmaceutical Council (NPC) outlined the limitations of many new tools for value assessment, positing that we have much more work to do—in particular in considering “what’s important to patients.” The authors critiqued five prominent value assessment models developed by the American College of Cardiology/American Heart Association, the American Society of Clinical Oncology, the Institute for Clinical and Economic Review (ICER), the Memorial Sloan-Kettering Cancer Center (DrugAbacus), and the National Comprehensive Cancer Network.
The NPC makes a number of important recommendations for improvement; however, the piece fails to take into account the progress already being made. In particular, the Avalere-FasterCures Patient-Perspective Value Framework (PPVF) version 1.0—developed in collaboration with a multistakeholder steering committee—has made significant progress in framing a new way to assess value from the patient perspective.

The Patient-Perspective Value Framework

Integrating patient perspectives into value assessment frameworks will not only help patients, but it will also enable pharmaceutical and medical device manufacturers, providers, and payers to develop, deliver, and pay for products that provide a more meaningful benefit to patients and higher value to society. Through a process that included significant public input and collaboration with other value framework developers, Avalere and FasterCures published version 1.0 of the PPVF on May 11, 2017.
Unlike the existing frameworks in which input from patients or other stakeholders is limited, the PPVF process included stakeholders from the start, including a significant number of patient groups. Twenty-three organizations contributed to the framework’s development as members of the PPVF steering committee. In addition, more than 230 individuals and organizations offered feedback to the draft PPVF. Importantly, 80 percent of the feedback came directly from patients, caregivers, and patient advocates.
Furthermore, to ensure the development of a framework that is truly built on the patient perspective, the PPVF started with a list of considerations—or criteria—that are important to patients when making health care decisions. These considerations were then organized into five domains, outlined in Exhibit 1. Each domain includes a set of criteria and outlines a methodology for how those criteria can be assessed through a set of identified metrics. This iterative, collaborative process yielded a framework that is significantly different from any of the other existing frameworks in five key ways.
  1. The value assessment is viewed through the lens of patient preferences.
  2. The PPVF considers outcomes that matter to patients and incorporates real-world data necessary to measure those outcomes, instead of limiting the measures considered to those tracked in randomized clinical trials (RCT).
  3. The PPVF measures the true cost to the patient and family instead of focusing on financial cost to the system alone.
  4. The PPVF acknowledges that different evidence applies to different patients and uses subgroup data where possible.
  5. Usability and transparency are underlying principles that serve as a foundation on which the PPVF value assessment rests.

Exhibit 1


Please visit the Avalere website to download a graphical summary of the criteria and measures as well as a detailed report outlining the PPVF version 1.0 methodology.
Each of the PPVF’s five domains contributes a different type of information to the framework and differentiates the PPVF value assessment in its own way, as described below. Together, the five domains assess the value of individual health care options relative to individual values and preferences.

1. An Assessment Driven By Patient Preferences

Patients in different situations may consider different criteria important. That is why the PPVF uses patient preferences—the assessment of patients’ values, needs, goals, expectations, and openness to financial trade-offs—to drive the value assessment methodology. The assessed patient preferences weight the other PPVF domains, criteria, and measures. This means that, for instance, quality of life may carry twice the weight of efficacy and effectiveness in the ultimate value assessment, if that’s what patients prefer.
If the PPVF is being used by patients and clinicians in the context of shared decision making, the PPVF will elicit patient preferences directly from the patient himself or herself. If it is being used to support value assessments at the population level (for example, by a health plan or policy makers), patient preferences can be assessed through surveying relevant literature, using registries that capture patient perspectives, and—if possible—conducting original research among patients.
The centrality of patient preferences to the PPVF value assessment is a unique feature of the framework. Other value frameworks only consider patient preferences tangentially or as “other considerations.” Recently, the ICER made significant efforts to integrate patient preferences in its 2017 update through a new process for considering its “other benefits or disadvantages” and “contextual considerations” domains. While this effort and similar efforts by other value framework developers to better represent the patient voice in their processes are commendable, none of these other frameworks have clearly placed patient preferences at the center of the decision-making process. The PPVF puts patient preferences front and center as the driver of the value assessment methodology.

2. Outcomes That Matter To Patients

Understanding the clinical benefits and risks of different health care options is central to any value assessment, but too often value assessments use only measures that narrowly focus on clinical benefits, such as those typically used in RCTs. The PPVF is unique in that it includes outcomes that consider the “whole patient,” ranging from a therapy’s effect on functional and cognitive status to a regimen’s complexity. The PPVF steering committee developed the list of patient-centered outcomes criteria through extensive outreach with patients, caregivers, and patient advocates to ensure that no factors important to a patient’s value assessment process were missed. The criteria measured under this domain include quality of life, complexity of regimen, efficacy and effectiveness, treatment-related side effects, adverse events, and complications.

3. The True Cost To Patients And Their Families

Financial constraints often create a burden comparable to more traditional side effects—so much so that many have started using the term “financial toxicity” to describe the condition. Because of this, you cannot assess value without considering costs that accrue to patients and their families. Unlike other value assessment methodologies that consider only cost to the system, the PPVF considers out-of-pocket costs to the patient and family, non-medical costs and burdens, and the impact of a treatment on future costs.
Specifically, the PPVF’s patient and family costs domain measures the financial impact of a patient’s insurance benefit design, such as deductibles, copayments, and the cost of associated supportive care, as well as the non-medical costs and burdens to the patient and family, such as lost productivity, the cost of travel, and the level of burden on family and caregivers.

4. Different Evidence Applies To Different Patients

Throughout the PPVF development process, patients communicated loudly and clearly a desire to understand if the evidence shows that the treatment might work for “people like me” (for example, patients with their specific type of tumor or of their age, race, or gender). While every value assessment must measure the quality of the evidence, the PPVF differs from other value assessments in its consideration of the applicability of evidence to specific subgroups through the use of nontraditional data sources (for example, clinical registries or administrative/electronic medical record repositories, drug/device label information, and cost transparency websites) that can adequately portray heterogeneity.

5. Prioritize Usability And Transparency

Other value frameworks articulate aspirations related to usability and transparency, but these commitments are often made in process documents and are not integrated into the framework. By maintaining usability and transparency as a domain and an integral part of the framework, the PPVF showcases its commitment to ensuring that the framework has a transparent approach and that the information displayed through each application is appropriate for, accessible by, and meaningful to its intended audience.

Patient Perspectives On Value: More Than A Talking Point

The need to incorporate the patient perspective on value has been a key talking point for all types of stakeholders in critiquing value assessment models. It is first on the NPC’s list of “improvements,” and the NPC is far from alone in this perspective. Some framework developers have explicitly articulated different purposes for their frameworks, such as driving payer and policy maker decision making. However, in a health care system in which patients increasingly bear substantial responsibility for the costs of their care, we believe that the patient perspective should be central to any value assessment—no matter the end user of the value determination. It’s time to stop treating this as a lofty, unattainable goal and instead embrace a fully defined framework for measuring value through the patient’s eyes.
Avalere and FasterCures recognize that the current research paradigm does not fully support this approach. However, we can make progress by increasing the focus on measuring patient-centered outcomes in trials and post-market studies, while also developing new tools to create transparency in patient costs. We also should leverage a growing electronic information infrastructure to robustly collect real-world evidence and analyze subgroup data.
The component pieces of the patient perspective on value are increasingly available, and the Avalere-FasterCures PPVF gives us a framework for using them to assess value from the patient’s perspective. It is time for other value framework developers to collaborate with patients and multistakeholder groups such as the PPVF steering committee to better integrate patient perspectives into their own methodologies.