Evolving public views on the value of one’s DNA and expectations for genomic database governance: Results from a national survey

We report results from a large survey of public attitudes regarding genomic database governance. Prior surveys focused on the context of academic-sponsored biobanks, framing data provision as altruistic donation; our survey is designed to reflect four growing trends: genomic databases are found across many sectors; they are used for more than academic biomedical research; their value is reflected in corporate transactions; and additional related privacy risks are coming to light. To examine how attitudes may evolve in response to these trends, we provided survey respondents with information from mainstream media coverage of them. We then found only 11.7% of respondents willing to altruistically donate their data, versus 50.6% willing to provide data if financially compensated, and 37.8% unwilling to provide data regardless of compensation. Because providing one’s genomic data is sometimes bundled with receipt of a personalized genomic report, we also asked respondents what price they would be willing to pay for a personalized report. Subtracting that response value from one’s expected compensation for providing data (if any) yields a net expected payment. For the altruistic donors, median net expected payment was -$75 (i.e. they expected to pay $75 for the bundle). For respondents wanting compensation for their data, however, median net expected payment was +$95 (i.e. they expected to receive $95). When asked about different genomic database governance policies, most respondents preferred options that allowed them more control over their data. In particular, they favored policies restricting data sharing or reuse unless permission is specifically granted by the individual. Policy preferences were also relatively consistent regardless of the sector in which the genomic database was located. Together these findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing.

The full article can be downloaded below.  

PRESCRIPTION PRICE TRANSPARENCY AND THE PATIENT EXPERIENCE

As stories about sticker shock and the cost of care dominate headlines and policy discussions, healthcare organizations are looking for cost-effective ways to improve patient outcomes and experience. Prescription price transparency tools hold particular promise. We already know that providers want greater price transparency for their patients. In fact, 74% of U.S. physicians say they want to see a patient’s medical benefit information before prescribing, and 59% want to compare the cost of similar medications. 

Are patients equally eager to talk medication costs and coverage at the point of care? Surescripts commissioned a survey of 1,001 U.S. patients to understand their prescription challenges, desires and behavior—and how their experience with their prescriptions affects the healthcare decisions they make.

The full Surescripts report can be viewed at this link.  

The value of healthcare data: to nudge, or not?

The processes of datafication, digitization and automation of healthcare and medicine are making new types and data available for analysis, and at greater volume. While the newly available data is often hailed as a solution to various problems in healthcare, there is only little discussion about who the use of such data empowers and who bears the costs. The use of healthcare data for “nudging”–e.g. to get patients to adopt healthier lifestyles–is a case in point: While such interventions are presumed to be cheap and effective, I argue that their value is a priori unclear. Both because of its assumed value-freeness, and because of its focus on individual behaviour, nudging draws attention away from the societal, political and economic factors that shape human practice. I conclude with a call upon policy makers to facilitate the use of healthcare data to build better institutions and to address social determinants of health before they seek to “fix” individual behaviour through nudging.

The full article can be viewed at this link.  

Value-Based Agreements in Healthcare: Willingness versus Ability

Although pharmaceuticals represent 10% of the overall US healthcare expenditure, the US drug spending and drug pricing are often the most scrutinized areas. For example, President Donald Trump’s “American Patients First” blueprint, which was released in May 2018, is intended as a proposal for multiple cost-reducing strategies, alongside extensive media coverage of drug price hikes for certain manufacturers. Pressure to reduce drug costs has only intensified over the past decade, inspiring increased collaboration and experimentation throughout the pharmaceutical industry.

In addition, the Affordable Care Act influenced a shift from volume to value, which has extended to the payment-delivery models used between health insurers (or payers) and pharmaceutical manufacturers. One such delivery strategy involves value-based contracts, which are designed to align drug prices with the way the drug performs outside of clinical trials or in the real-world setting.

The full article can be downloaded below.  

Thinking Beyond The Rebate Debate: Strategies To Bring Value To Healthcare

The Trump administration may have dropped the drug rebate rule last year, but the American people haven’t given up their search for security.

Healthcare is a $3.5 trillion industry projected to balloon even more in the next decade and consumers are finally saying “enough is enough.” They’re speaking out against unsustainable costs and directing a sizable portion of their frustration toward the pharmaceutical industry. Eight in ten Americans now say prescription drug prices are “unreasonable,” as pharma scrambles to build a legislative firewall by putting significant sums of money behind candidates who will protect their interests.

As we move closer to the 2020 presidential election, the voices calling for change will only get louder. And as a result, the need to introduce new strategies to lower all healthcare costs will only become more critical.

The full Forbes article can be viewed at this link.  

Why Aspiring Entrepreneurs Are Interested In Value-Based Medicine

Healthcare is a thriving market when it comes to business. Most people might think the industry is only for doctors and nurses, or other people with medical backgrounds, but this is not the case. The healthcare sector is an amazing opportunity for aspiring entrepreneurs from all walks of life and experience. It presents an incredible chance for someone to genuinely help people and make plenty of money at the same time.

The reason healthcare is attractive to aspiring entrepreneurs can be attributed in part to the recent government overhaul in the industry. The Centers for Medicaid Services (CMS) transitioned from fee-for-service to value-based care. It’s a game-changer not only for patients, but also for entrepreneurs who have a knack for customer service, are experts at efficiency and strive to provide quality.

The full Forbes article can be viewed at this link.  

Toward a Person-Centred Learning Health System: Understanding Value from the Perspectives of Patients and Caregivers

What matters most to people who use healthcare?  What matters to their caregivers?  How do we use this information to support ongoing quality improvement in the healthcare system?  In this paper, we explore three concepts from the current healthcare discourse, intended to drive health system improvements: person-centred care, value-based healthcare and learning health systems.  We propose that key tenets from each of these concepts should be combined to create a person-centred learning health system (PC-LHS).  We highlight two key points: First, in achieving a PC-LHS, the experiences, priorities and values of patients and their caregivers should be continually collected and fed into data systems to monitor ongoing quality improvement and performance benchmarking.  Second, the information collected in determining value must include important contextual factors-- including the social determinants of health-- as patient health and well-being outcomes will ultimately be shaped by these factors, in addition to health system and disease factors.  In summary, improving value for patients and caregivers, by capturing the things that matter most to them, within their life contexts, needs to be part of the continuous quality improvement cycle that lies at the heart of a learning health system.  

The full article can be downloaded below.  

An $800 Head Cold? Time to Fight for Price Transparency in American Healthcare

Jay Singh had a nasty head cold. Not a “will-I-survive-this-plague” kind of infection, but also not one he thought, if left to its own devices, would blow over in a day or two. So he went to the primary care clinic near his exurban New York City home. The doctor spent ten minutes examining and talking to Singh (a pseudonym), a quick look at his throat, a cursory listen to his lungs. The doctor ordered a routine “respiratory viral panel” and prescribed a cough suppressant. Singh had already anted up a co-pay for the office visit, but a few weeks later he received a bill for the services rendered: $800 to cover his doctor’s time and the cost of the viral panel.

I spoke to Singh several months after his appointment, and he was still determined to leverage his experience into political action: he thinks it’s time for the state of New York, perhaps the whole U.S., to bring healthcare prices out of the dark so patients like him can make informed decisions about their medical care.

The full Forbes article can be viewed at this link.  

2019 IMPACT REPORT: PRESCRIPTION PRICE TRANSPARENCY

Prescription price transparency offers patients and prescribers the power of informed decision-making at the point of care. It improves outcomes, reduces costs, increases medication adherence and enhances the care experience between doctor and patient. The data we present in this report reflects a strong and growing demand for prescription price transparency at the point of care. For example, the number of prescribers leveraging patient-specific information on drug costs and therapeutic alternatives in their electronic health record (EHR) more than doubled in 2019, from roughly 100,000 in January to nearly 250,000 in November.

The full Surescripts report can be viewed at this link.  

5 Ways Technology Will Enable Value-Based Care in 2020 and Beyond

If your first thought while reading that statement was, “I’ve heard that before – and nothing actually ever changes,” your skepticism is well founded, as industry experts have been purporting significant transformation for at least a decade. However, I truly believe we’ve reached a tipping point, and that consumers will see real healthcare change in the near future. It’s a bold statement to make, but there are a few forces at work that I believe will make it true — namely, the intersection of value-based care and technological innovation. 

1. Digital Therapeutics: Engaging With Patients During Recovery 
2. Promoting Patient Wellness With Wearables 
3. Price Transparency: What’s The Cost Of My Care?
4. Healthcare, Personalized: Precision Medicine and Genetics
5. Dr. A.I. Will See You Now

The full Forbes article can be viewed at this link.