Teenage Migraine Researcher Uses Mobile Technology to Enhance Study

A new clinical trial for adolescent migraine is underway, and it’s harnessing the power of consumer technology to collect better data and make study participation easier. The BRAiN-M Study, which is examining whether melatonin (a natural supplement) is effective in preventing teenage migraine, uses Fitbit devices and an online “headache diary” to collect data from study participants remotely.

Besides trying to figure out how to prevent teenage migraine, the study’s lead investigator, Dr. Amy Gelfand of UCSF, is looking to make pediatric migraine clinical trials more inclusive and accessible. Continue reading

Notes from the Digital Health Symposium: Interactions, Games, and Incentives in Healthcare

Can we gamify healthcare? There are interesting ideas out there. Here are a few that were presented during the event.

Ron Gutman, Founder & CEO of healthTap, presented the main idea behind healthTap: “trustsourcing”. When it comes to the consumption of health-related information online, physicians are the missing piece, he said. healthTap offers a new way for physicians to engage online – with their patients and with each other. They can answer questions to better serve existing patients and attract new ones, and they can virtually “agree” with what colleagues wrote which will automatically “feed” into their own “virtual practice”. I consider the “agree” button the professional networking aspect of the tool. Patients and people looking for health-related information can access the trusted (evidence-based) information 24/7, from anywhere.

I’d be curious to learn how they are going to assess the impact of the tool, e.g. saving time and money, which in the long run will serve as key motivators for physicians in addition to getting recognition and  building reputation. Keep reading

Sutha Kamal, Co-Founder and the CEO of Massive Health, talked about leveraging feedback loops, visualizing data to change behavior, and the importance of nuanced goals. They’ll be rolling out early versions of their products over the next couple of months and are looking for feedback. Sign up for one of their first experiments at http://www.massivehealth.com/experiment

Edwin Miller, VP Product Management at Practice Fusion, presented their free solution to transform the Electronic Health Record (EHR) System. According to Miller, 90% of doctors are still using paper charts.

Lindsay Volkmann, Director of Business Development at Keas, talked about how they are harnessing the power of play to encourage employees to get healthy.

Keas has combined gamification techniques with wellness incentives in an effort to get officemates battling one another to get healthier.

For about a year now, they have tested their social game. An average of 40% of the employees sign up and 70% of them stick with the program which resulted in significant behavior changes. Keep reading 

Ida Sim, MD, PhD, Professor of Medicine and Co-Director of CTSI’s Biomedical Informatics at UCSF, added another important question to the mix: How can we create a “learning healthcare system”, described in “Open mHealth Architecture: An Engine for Health Care Innovation”, that allows an integrated user experience, analysis  and evaluation services, and secure data sharing. View Ida’s presentation

“A Learning Healthcare System that is designed to generate and apply the best evidence for the collaborative health care choices of each patient, and provider; to drive the process of discovery as a natural outgrowth of patient care.” – U.S. Institute of Medicine, Roundtable Charter

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The event was co-sponsored by UCSF’s CTSI.

“Using Prizes to Spur Open Innovation”: The National Institutes of Health (NIH) Explore Potential Approaches

This week’s NIH conference “Crowdsourcing: The Art and Science of Open Innovation” could be a hint that the research agency is seriously considering new ways to take advantage of the “processing power of lots of willing brains”.

ScienceInsider published a summary report that states:

NIH Director Francis Collins would soon sign papers that would ensure NIH is compliant with the America COMPETES Act, which gives federal agencies the authority to offer cash incentives for researchers to tackle high-risk, high-reward research questions that have eluded more traditional funding platforms, such as grants and sponsored research.

The America COMPETES Act was first passed in 2007 and was reauthorized in December. Under its authority, federal agencies outline a problem they’d like solved on Challenge.gov, then open the competition to individuals or teams, evaluate the results, and award a money prize to whoever turns in the best solution.

Pfizer Announces First U.S. “Virtual” Clinical Trial Allowing Patients to Participate Regardless Of Geography

The randomized pilot study, called REMOTE, uses mobile phone and web-based technology (e.g. electronic diaries, online testing tools, a dedicated website) to collect the necessary data for the trial without clinic visits.

Investigators plan to enroll about 600 patients from about 10 states across the United States. Pfizer will compare results to previous clinical trials and assess whether virtual trials can save time and obtain the same results as traditional ones, or perhaps even more reliable data through increased patient compliance, lower withdrawal rates and real-time data collection.

Although not all clinical trials could be done remotely, if this pilot proves successful, it might be an interesting model for our emerging UCSF-CTSI Participant Recruitment Service.

Watch the animated video that outlines the trial’s basics to patients

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How Can We Make Biomedical Studies More Inclusive?

Even in 2011, persons with disabilities (more than 47 million Americans)
are still “ profoundly underrepresented in mainstream health research”. In their recent article, the researchers Ann Williams and Shirley Moore propose a “Universal Design of Research” (UDR), which allows “routine inclusion of persons with disabilities in studies, without the need for adaptation or specialized design.”

They offer a few guidelines and ideas to support researchers in designing materials in accessible formats. Some good food for thought as the new UCSF Participant Recruitment Service (PRS) takes shape. Here is what they propose:

… provide multisensory, flexible options for recruitment, research instruments (such as questionnaires), measurements, and responses from participants, with reasonable accommodations that invite and facilitate participation by persons with disabilities; and when you do not know how to include someone with a disability, consult someone who does (the potential research participant, another person with that disability who is knowledgeable about the range of methods people use for living fully with it, or a professional who works with persons who have that disability). 

Practical guidelines for implementing the Universal Design of Research include:

… (i) plan multiple options for people to learn about, respond to, and arrive at opportunities to participate in research; (ii) provide multiple means to communicate the information in research instruments and instructions for participants; and (iii) provide multiple means of responding to research instruments and self-management interventions.

I wonder what our PRS team thinks about these ideas. And, do we know of other successful approaches, web-based technologies or great examples we could share?  Ann Williams and Shirley Moore are looking for ideas to develop comprehensive guidelines.

“No Health Without Research”

For the first time in its history, the World Health Report 2012 will focus on the theme of research for better health. To “complement and substantiate the key messages” in the report, the WHO and PLoS launched a new initiative to invite the submission of research papers.

Decisions on healthcare are still made without a solid grounding in research evidence, and an impetus is required for this state of affairs to change. Aimed at ministers of health, the report will provide new ideas, innovative thinking, and pragmatic advice on how to strengthen health research systems.

Let your colleagues and researcher friends know…
More info:

Image Credit: Kees Straver at flickr.com