Stories about: patient engagement

Building precision medicine: Power to the patients

Tools to build precision medicinePrecision medicine involves the development and application of targeted therapeutics based on patients’ genomes, lifestyles and environments. The recent conference on precision medicine at Harvard Medical School highlighted a few challenges in scaling up this process.

To help further precision medicine, the Obama administration and NIH launched the All of Us program, registrations for which are slated to start later this year. Its aim is to collect health data from one million Americans.

But the conference also highlighted several tools that patients can use proactively to collect, share and analyze their own data and use it to improve their own health — and contribute to precision medicine as citizen scientists.

Read Full Story | Leave a Comment

Citizen science: Giving patients a voice in drug development

citizen science patient voice drug development

There’s a natural tension between wanting the FDA to ensure safety and efficacy before a drug enters the market and wanting to speed up what many view as a glacially slow approval process. The rare disease community tends to fall in the second camp, and has become increasingly vocal in calling for more clinical trials, more flexibility in their design and redefinition of what constitutes a benefit.

ALS advocates, for example, have called for a parallel track, “in which FDA provides an early approval based on limited data, and then continues the learning process in a confirmatory clinical trial and if needed, patient registries to collect additional data from patients receiving the drug outside the clinical trial…”

Recent legislation is encouraging patient engagement in drug development, especially for conditions with profound unmet medical needs. In its 2012 iteration, the Prescription Drug User Fees Act (PDUFA) introduced public meetings to get input from the patient community, captured in a series of informative white papers.

Read Full Story | Leave a Comment

Can the collaborative economy work in health care?

Airbnb Uber model health care
Airbnb and Uber have disrupted the hotel and taxi industries by finding and tapping unused assets. What's in store for medicine?

David Altman is manager of marketing and communications in Boston Children’s Hospital’s Technology and Innovation Development Office.

Robin Chase, co-founder of Zipcar and current CEO of Buzzcar, envisions collaboration as the future of the world’s economy. Her concept, PeersIncorporated, brings excess capacity of consumer goods or assets—such as unused time or untapped data—to online platforms and apps where consumers (“peers”) provide insights that drive business growth.

Speaking recently at Boston Children’s Hospital, Chase elaborated on the concept of excess capacity, which is the basis of Buzzcar. Typically, families pay an average of $9,000 a year—$25 a day—for cars they use only 5 percent of the time. That unused time represents value and economic potential. Buzzcar’s platform harnesses that unused capacity, allowing multiple peers to supply and book cars on an easy-to-use website at a low cost.

Read Full Story | Leave a Comment

What happens after a medical hackathon? Lessons from two winning projects

Judy Wang, MS, is a program manager in the Telehealth Program at Boston Children’s Hospital.

hackathons
Hackathons create ideas and excitement, but then reality sets in.

Much has been written about the successes that result from medical hackathons, in which people from across the health care ecosystem converge to solve challenges. For example, PillPack, which formed out of MIT Hacking Medicine, recently closed an $8.75 million funding round. But is this a realistic snapshot of what happens after a hackathon? We took a look at two of the 16 teams that competed at Boston Children’s Hospital’s Hacking Pediatrics last year.

Read Full Story | Leave a Comment

Has the patient experience changed in 20 years? Retooling for engagement

Israel Green Hopkins MD croppedIsrael Green-Hopkins, MD, is a second-year fellow in Pediatric Emergency Medicine at Boston Children’s Hospital and a fierce advocate for innovation in health information technology, with a passion for design, mobile health, remote monitoring and more. Follow him on Twitter @israel_md.

The Centers for Medicare & Medicaid Services (CMS) defines patient engagement as having two primary objectives: to enable patients to “view online, download and transmit their health information” and to enable providers to conduct secure messaging with patients.

In 2007, focusing largely on these goals, Microsoft launched HealthVault—a Web-based electronic health record designed to fit the needs of both patients and providers. Countless private and public institutions have followed, including Boston Children’s Hospital.

But aside from satisfying regulatory requirements, are these interventions the improved engagement that patients are demanding? How can we be transformative in our approach to care and create an environment that is receptive to the engaged patient?

We first need to reconsider what it means to maneuver through the health care system as a patient.

Read Full Story | 3 Comments | Leave a Comment

Solving patient engagement: It’s about the data

Doctor and patient reviewing health data collected in an EMR.At the start of today’s National Pediatric Innovation Summit + Awards 2013 panel on patient engagement, healthcare journalist Carey Goldberg offered up a personal anecdote about engagement— or the lack of it—in medical care:

“I was having a minor dermatological procedure, and right before it started, I said to the doctor, ‘This really is a good idea to get this done, right?’ And she said, ‘No, actually, you don’t really need to get it done.’ And I didn’t stop the procedure. And I realized that I embodied the problem of patient engagement. It is a piece of [the health care] puzzle.”

Goldberg’s story framed a discussion that ranged from outcomes measurement to data access, from healthcare incentives to care coordination—all centered on one overriding question: How do we encourage patients to become more engaged in their own medical care?

And given the number of topics that were covered, it’s clear how complex a question that is. It’s one that engages multiple stakeholders—patients and their doctors for starters, but also insurers, policymakers and regulators, health care systems and more.

Read Full Story | Leave a Comment

10 trends to watch in pediatric medicine: Part 2

Sleuthing out pediatric trendsIn Part 1 last week, Vector took a look at digital health apps, telemedicine, genomics, phenomics and new behavioral diagnostics as transformative trends in pediatrics. This week, we complete our list. These posts will also appear as an article in the fall issue of Children’s Hospitals Today magazine.

6. New pharma research and development (R&D) models

Academic medical centers have always worked with the pharmaceutical industry but never so closely as now. In the old model, industry drove therapeutic development. A company might fund an academic project or supply reagents, but the relationship generally ended with the project (and publication of a paper).

Now, with drug pipelines drying up and R&D costs rising, Big Pharma is under pressure to change. New industry-academia collaborations are forging creative partnerships, altering how both parties do business. The new models are allowing hospital researchers to do what they’ve never done before: take the lead in R&D.

Read Full Story | Leave a Comment

What is meaningful patient engagement?

"Engagement" can take many forms, not all of them authentic. (Jim Bowen/Flickr)
‘Engagement’ can take many forms, not all of them authentic. (Jim Bowen/Flickr)

Richard Antonelli, MD, is a primary care pediatrician and medical director of Integrated Care and Physician Relations and Outreach at Boston Children’s Hospital. He also co-chairs the Task Force on Care Coordination for Children with Behavioral Health Needs, a group within the Massachusetts Child Health Quality Coalition.

Tools and apps designed to engage children and families in their care are proliferating. But are they meaningful? At its best, patient engagement isn’t just technology that brings lab results and medication reminders to a patient’s or parent’s iPhone. It’s about creating a relationship in which families are able to specify their care needs; clinicians and families learn from each other; and patients and families are able to manage their own care.

Patients and families are not just consumers of health care—they define goals and priorities. Their insights are essential.

A powerful tool for supporting a meaningful family/provider relationship is the Care Map. It was developed by Cristin Lind, parent of a child with special needs, who found herself in the role of care coordinator,

Read Full Story | Leave a Comment