Featured Research

from universities, journals, and other organizations

New technologies fuel patient participation and data collection in research

Date:
July 8, 2014
Source:
Duke Medicine
Summary:
The changing dynamic of health studies driven by “big data” research projects will empower patients to become active participants who provide real-time information such as symptoms, side effects and clinical outcomes, according to researchers. The analysis lays out a new paradigm for health research, particularly comparative effectiveness studies that are designed to assess which therapies work best in routine clinical practice.

The changing dynamic of health studies driven by "big data" research projects will empower patients to become active participants who provide real-time information such as symptoms, side effects and clinical outcomes, according to researchers at Duke Medicine.

The analysis, published in the July 2014 issue of Health Affairs, lays out a new paradigm for health research, particularly comparative effectiveness studies that are designed to assess which therapies work best in routine clinical practice.

Fueled by new technologies -- including electronic health records and monitoring devices that people can wear as clothing or accessories -- health studies are now poised to integrate data from a much larger pool of information. The new data is immediate and actionable, providing not only research material, but also clinical information that can improve the patient's care in the short term.

"When linked to the rest of the available electronic data, patient-generated health data completes the big data picture of real people's needs, life beyond the health care system, and how changes in health and health care lead to meaningful changes in people's lives," said senior author Amy Abernethy, M.D., Ph.D., professor of medicine and director of the Center for Learning Health Care at Duke.

Abernethy and colleagues advance the perspective that big data and comparative effectiveness research have the potential to greatly enhance the health of both individual patients and whole populations.

They argue that using new ways of acquiring and aggregating data directly from clinical care offers an alternative to randomized controlled trials, which are currently the gold standard of medical studies, particularly for new therapies.

"Generalizing data from these trials to larger, more heterogeneous populations to determine treatment effectiveness can be problematic," Abernethy said. "Further, it takes years -- often more than a decade -- for a trial to progress from the idea stage to actionable information, and cost and complexity mean that some important questions go unanswered."

Abernethy said electronic health records provide a huge volume of information from a much wider and diverse pool of participants than has typically been available. The clinical information can be used for research to improve care for current patients as well as future patients.

Electronic health records can also be augmented with patient-driven data, with real-time reporting directly to the health record during a clinical visit, or via the patient's personal input of symptoms, side effects, quality of life assessments and other factors.

With the increasing availability and popularity of wearable monitoring devices that track such outcomes as heart rate, blood pressure and blood sugar levels, patients are now able to be active participants in their daily health needs, while also adding to the broader data collection.

The researchers noted that this new reliance on patient-driven data is already being incorporated in studies funded by the Patient-Centered Outcomes Research Institute, the NIH Collaboratory and many others.

"The value of engaging with patients to generate the information needed to provide care that is truly patient-centered and individualized will benefit society as a whole," Abernethy said. "With this kind of information, health care and health care research can be truly patient-centric."


Story Source:

The above story is based on materials provided by Duke Medicine. Note: Materials may be edited for content and length.


Journal Reference:

  1. L. Howie, B. Hirsch, T. Locklear, A. P. Abernethy. Assessing The Value Of Patient-Generated Data To Comparative Effectiveness Research. Health Affairs, 2014; 33 (7): 1220 DOI: 10.1377/hlthaff.2014.0225

Cite This Page:

Duke Medicine. "New technologies fuel patient participation and data collection in research." ScienceDaily. ScienceDaily, 8 July 2014. <www.sciencedaily.com/releases/2014/07/140708165714.htm>.
Duke Medicine. (2014, July 8). New technologies fuel patient participation and data collection in research. ScienceDaily. Retrieved September 2, 2014 from www.sciencedaily.com/releases/2014/07/140708165714.htm
Duke Medicine. "New technologies fuel patient participation and data collection in research." ScienceDaily. www.sciencedaily.com/releases/2014/07/140708165714.htm (accessed September 2, 2014).

Share This




More Health & Medicine News

Tuesday, September 2, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

Get on Your Bike! London Cycling Popularity Soars Despite Danger

Get on Your Bike! London Cycling Popularity Soars Despite Danger

AFP (Sep. 1, 2014) Wedged between buses, lorries and cars, cycling in London isn't for the faint hearted. Nevertheless the number of people choosing to bike in the British capital has doubled over the past 15 years. Duration: 02:27 Video provided by AFP
Powered by NewsLook.com
Can You Train Your Brain To Eat Healthy?

Can You Train Your Brain To Eat Healthy?

Newsy (Sep. 1, 2014) New research says if you condition yourself to eat healthy foods, eventually you'll crave them instead of junk food. Video provided by Newsy
Powered by NewsLook.com
We've Got Mites Living In Our Faces And So Do You

We've Got Mites Living In Our Faces And So Do You

Newsy (Aug. 30, 2014) A new study suggests 100 percent of adult humans (those over 18 years of age) have Demodex mites living in their faces. Video provided by Newsy
Powered by NewsLook.com
Liberia Continues Fight Against Ebola

Liberia Continues Fight Against Ebola

AFP (Aug. 30, 2014) Authorities in Liberia try to stem the spread of the Ebola epidemic by raising awareness and setting up sanitation units for people to wash their hands. Duration: 00:41 Video provided by AFP
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins