When children return home from the hospital after surgery, parents can be overwhelmed by the written information and instructions for follow-up. At the MIT Media Lab’s Health and Wellness Hackathon earlier this year, the focus was on empowering patients to take an active role in their health. As my colleague Brian Rosman described, our team from Boston Children’s Hospital attended and spent two weeks developing “Ralph,” a mobile application for managing post-operative care that incorporates an avatar and features of gaming to engage and motivate children to follow their regimen. I was one of the primary programmers for our group.
We won third place, working alongside five other talented teams. Here are some snapshots of what they were up to — helping patients manage asthma, diabetes, pain, cardiac rehab and more. …
For Debra Weiner, MD, PhD, working in the Emergency Medicine Department is a numbers game. During a 12-hour shift she works with more than 50 other providers, sees up to 25 patients and analyzes multiple lab results. Every day she’s also meeting new staff members in addition to new patients.
“People don’t know each other,” Weiner said at a recent Innovators’ Forum, a monthly internal lecture series intended to showcase and encourage new developments at Children’s Hospital Boston. “We have over 100 nurses and physicians and over 200 trainees that filter in [every two to four weeks]… it’s hard to remember who everyone is and what they do.”
Coupled with the frenetic pace of Children’s Emergency Department (ED), remembering names and managing the flow of patients becomes a constant challenge. …
A major challenge in drug development is figuring out what might go wrong. During the development process, a new drug might be given to a few thousand people, maybe fewer if it’s for a rare or orphan disease – just enough to tell whether it does what the researchers think it will and to establish its short-term safety.
Once a drug is approved and available to the public, and out of the controlled laboratory or clinical trial environment, regulators rely on a mix of surveillance, reporting (by doctors and patients) and data mining to catch problems.
But these methods can fall short when it comes to rare side effects, drug-drug interactions or adverse events that arise only after patients have been on a drug for a long time. It can be years before doctors and regulators gather enough data and address safety problems with label warnings, revised prescribing guidelines or, in extreme cases, removal from the market.
So while detection works to a point, wouldn’t it be better if we could predict adverse drug events before a drug even hits the market? …
This past October I attended the Health 2.0 conference, where there was a lot of discussion on the use of niche social networking sites to empower and inform patients, caregivers and families. There is a lot of debate about these communities, but one thing that’s not debatable is their popularity.
MedHelp, for example, has over 12 million monthly users. Patientslikeme – originally designed, by three MIT engineers, for patients with ALS – now has more than 100,000 members and 500 health conditions. Daily Strength has more than 500 communities, including breast cancer, depression, cystic fibrosis, divorce, infertility and parenting. WEGO Health, Alliance Health … the list goes on. Sites like TuDiabetes that let patients share and analyze their health data are starting to be tapped for public health surveillance.
As we’ve discussed before, clinical research really comes down to a numbers game. But getting enough patients for a study, particularly for rare diseases, can be a daunting challenge. Similarly, it can be hard to tell whether observations made in just two or three patients, say a possible new medication interaction or a new diagnostic presentation, are part of a trend – one that’s worth grant money to study.
From the ashes of the demise of Google Health may yet rise a health care information system that really works — for doctors and patients alike. And let’s not forget caregivers – those responsible for the health of their children or aging parents. They need all the help they can get.
Interviewed last week for CommonHealth, WBUR.org’s health blog, Ken Mandl of the Children’s Hospital Informatics Program (CHIP) argues that Google’s effort fell short on a key ingredient: data. Mandl co-founded Children’s Hospital Boston’s open-source patient-controlled record, Indivo, and wants to see a world where medical data flows unfettered – brings real value. Here’s how he put it to CommonHealth: …
Before you know it, flu season – that miserable time of sneezing, snuffling, coughing, and generally feeling blah – will be upon us again. And as with anything, the best way to deal with the flu is to be prepared for it.
But when, exactly, is the right time to start stocking up on tissues and looking for vaccination clinics? You could go with the conventional wisdom: Get the annual flu vaccine in the fall and spend the next five months avoiding anyone with bleary eyes and a runny nose.
Or, to try to get a more targeted read on when the flu will appear in your town, you could turn to the power of the web. In 2008 – a few months before H1N1 influenza appeared on the scene – Google launched Google Flu Trends, which mined user search data to gauge flu activity on a national, state, and even (in some cases) city level.
The H1N1 outbreak proved to be a tipping point for online disease tracking tools. Recognizing this, the US Center for Disease Control and Prevention (CDC) is getting into the act with the CDC Flu App Challenge. A contest run through Challenge.gov, the Flu App Challenge encourages developers to come up with “an innovative use of technology to raise awareness of influenza and/or educate consumers on ways to prevent and treat the flu.” Submitted apps – for the web, for desktop computers, for mobile devices – use publicly available data feeds, including at least one maintained by the CDC, to promote healthy behavior for flu prevention. All of the submitted apps are eligible for several awards, including a People’s Choice Award chosen by public vote. …
What do a project cataloging pictures of galaxies, an RNA folding game, and a call for people with diabetes to contribute data all have in common?
Each is part of a new revolution in science. Called “citizen science,” this revolution takes science out of traditional academic or industrial environments and into the population at large, asking the general public to take part in activities that further particular areas of research.
Citizen science projects tap the aggregate computing power of crowds to help collect or analyze huge data sets, running the gamut from online games (e.g., FoldIt, EteRNA) to screen savers that make use of your computer while it’s asleep (e.g., SETI@home) to projects asking people to count or categorize images from large-scale astronomy projects (e.g., GalaxyZoo, Stardust@home). Some even try to reduce animal-vehicle collisions on the nation’s roadways by cataloging and mapping roadkill. …
What does paperlessness mean? It’s about helping patients, says Daniel Nigrin, Chief Information Officer at Children’s Hospital Boston. This approach helps explain why he was named one of the InformationWeek Healthcare 25, a short list of leaders driving the healthcare IT revolution.
“The integration of a patient’s data has to be one of the topmost national priorities,” Nigrin says. “It will eventually lead to better care, and hopefully a reduction in cost.”
This need is becoming critical as healthcare reform rolls out and primary-care practices become patients’ medical homes, integrating information from …
A teenager with type I diabetes has general admission tickets to a U2 concert. She’ll have to stand in a crowd all day to get a decent spot, and wonders how to make sure her blood sugar doesn’t hit a dangerous low.
A grandpa with type II diabetes is tired of people thinking he can’t ever have any sweets. And a new mom with diabetes is too overwhelmed with her baby and work to manage her illness.
All three, from different nations and continents, recently shared their stories on a social networking site for diabetics – part of an increasing trend for patients to turn to online social networks for healthcare. I came across their stories, along with some identifying information, without even having to register as a member of the site I was on.