iLoveBenefits: Industry News Blog

Will you participate in the Precision Medicine Initiative?

According to a recent survey, 79% of respondents supported the proposed Precision Medicine Initiative’s planned national cohort study, which aims to tailor targeted treatments to specific diseases, and 54% said they would definitely or probably participate if asked. Source: “A Survey of U.S Adults’ Opinions about Conduct of a Nationwide Precision Medicine Initiative® Cohort Study of Genes and Environment,” PLOS One, August 17, 2016,

Authentically listening to patients is more than good beside manner

At PCORI, one of our key planks is authentic involvement of patients and their caregivers at every point along the patient centered outcomes research (PCOR) process. Authentically listening to patients is beginning to demonstrate that it holds value in improving care and care processes.

Patient reviews of docs tend to focus on bedside manner, communicationA Vitals report found most patients who provide online doctor reviews leave positive feedback and tend to focus on interpersonal skills and bedside manner. “These softer metrics reinforce the importance of a patient feeling heard and valued,” said Vitals CEO Mitch Rothschild, noting a correlation between patient experience and outcomes. News (7/22)

Patient-generated data in comparative effective research will enhance quality of care

Patient-generated data and comparative effectiveness research hold the key to greatly improving both individual and population health, according to a study published in Health Affairs . Read more here:


How do you know the provider referral is best one for you

Online tool lets patients compare health care services,, an online resource that nabbed the second spot in the Health Datapalooza’s Code-a-palooza challenge, was developed by karmadata to help patients locate the best surgeon in their area by comparing surgeons’ volumes and hospital quality information. “ is our opening salvo in creating free tools for patients, putting them in the driver’s seat for making informed decisions that impact their own healthcare,” said karmadata CEO and founder Sean Power. (6/9)

Scientists embark on unprecedented effort to connect millions of patient medical records

Nothing of this scale has been built before, and researchers say the potential of the network to speed up research efforts and to answer questions that have long vexed scientists cannot be overstated. But the creation of the network presents tricky ethical questions about who owns and controls the data, how to protect patient privacy and how research questions will be prioritized.

“Both the opportunity and the anxiety are pretty electrifying,” Francis S. Collins, director of the National Institutes of Health, said in an interview.

The origins of the patient project lie in an obscure part of the 2010 Affordable Care Act. As part of the nation’s health-care overhaul, Congress created an independent nonprofit group to help patients and their doctors make better-informed decisions about care. Dubbed the Patient-Centered Outcomes Research Institute, or PCORI, and based in the District, the organization’s mandate is to launch, fund and coordinate research on “comparative effectiveness” — to find out which drugs, devices and treatment options are more effective than others.

Read more here from the Washington Post

Patients receive . . . despite guidelines

Here is an example, of use despite guidelines. Do the guidelines rise to the level of evidence? Do we understand what information providers, patients and their caregivers need to either validate the decision to take action not in alignment with guidelines, or information necessary to have a discussion and make a decision to follow guidelines?


Many psoriasis patients receive steroids despite guidelines
Corticosteroids were the second-most prescribed systemic treatment for psoriasis despite recommendations from experts, according to a study in the Journal of Cutaneous Medicine and Surgery. Researchers analyzed survey data gathered on psoriasis drugs from 1989 to 2010 and found that corticosteroids were prescribed 650,000 times to treat the skin condition, mostly by dermatologists, out of 21 million visits. HealthDay News (2/28)

Open Science – Others should be able to validate what you claim to be so

Op-Ed Contributor

Give the Data to the People


Results of clinical trials should be accessible to all scientists.

Friends of Cancer Research — in Tribute to Ellen Sigal

This amazing woman is a force in cancer research like no other. As Sherry Lansing said, without Ellen Stand Up to Cancer would not exist.

Partnering with Patients . . . is it beginning to take hold?

This from the IOM:

Partnering   with Patients to Drive Shared Decisions, Better Value, and Care Improvement –   Workshop Proceedings

In an efficient health care system, care choices are democratized and   based on the best evidence. Empowering patients to become partners in –   rather than customers of – health care is a critical step on the road to   achieving the best care at lower cost, although the infrastructure and   cultural changes necessary to transform the patient role are significant.   Encouraging patient engagement in care decisions, value, and research is   crucial to achieving better care, improved health, and lower health care costs.

This publication details discussions during the February 2013 IOM   workshop, sponsored by the Gordon and Betty Moore Foundation and the Blue   Shield of California Foundation. The event gathered patients and experts in   areas such as decision science, evidence generation, communication   strategies, and health economics to consider the central roles patients can   play to bring about progress in all facets of the U.S. health care system.   The workshop built on the ongoing work of the Roundtable on Value & Science-Driven   Health Care to raise awareness and demand from patients and families for   better care at lower costs and to create a health care system that learns and   improves continuously.

Read the Workshop Proceedings   >>
Watch the Video Summary >>
Read the Meeting Summary >>

What will make comparative effectiveness take hold for patients and clinicians

Why the Slow Take-up of Comparative Effectiveness Research? It’s
Time and Money, Says a New PCORI Survey

This article from analyzes the PCORI study referenced above. ThisWhat
survey concludes that while patients and physicians value CER, most are not
familiar with what it entails and the lack of familiarity about CER as a
concept — coupled with the lack of an existing relevant evidence base in areas
clinicians look for information — explains why CER is still not commonly used
in practice. In order to facilitate more active participation in research, the
survey advocated as high-priority strategies the establishment of a link
between engagement and patient care, through financial compensation, for use of
CER. (, July 16, 2013)

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