Navigation Links
Patient-Controlled Health Records Could Change Future of Research
Date:4/16/2008

Used wisely, they may spur discoveries, but some warn privacy needs regulation

WEDNESDAY, April 16 (HealthDay News) -- Increasing patient control of health records could dramatically change how medical research is conducted, say Children's Hospital Boston researchers.

In a Sounding Board article in the April 17 issue of the New England Journal of Medicine, the researchers noted that the shift to personally controlled health records (PCHRs) will give patients and doctors easier access to records during clinical care and will also have a major impact on the conduct of biomedical research.

With PCHRs, patients have Web-based access to almost all the information -- such as lab tests, diagnoses, medications and clinical notes -- in their medical records. They can decide who gets to see that information.

"Giving patients access and control over their medical records will unlock a whole new world where researchers will suddenly be able to recruit hundreds, thousands, possibly millions of patients from all over the world, and have access to new data sets and populations. Imagine the possibilities this will bring and the impact it will have on bringing research to the bedside," article co-author Dr. Isaac Kohane, of the hospital's informatics program, said in a prepared statement.

More than a decade ago, Kohane, colleague Dr. Kenneth Mandl and others on the informatics team at Boston Children's developed the first PCHR.

While PCHRs offer many benefits, there are some potential pitfalls.

"While this is exciting indeed, without forethought and regulation, the tremendous benefit of PCHRs -- for research and clinically -- could easily be overshadowed by problems that could arise from the unethical and uncontrolled use of a patient's valuable medical information," article co-author Dr. Kenneth Mandl said in a prepared statement.

"Who will have access to the data, for what purposes, and under what sort of regulation? Can patients sell their information? How will we establish and protect their identity? These are the kinds of questions -- among many others -- that we need to ask now and clarify before PCHRs become mainstream," Mandl said.

"While PCHRs may seem futuristic, they are here now and will be widely adopted in the not-so-distant future. Fortune 100 companies are already signing on to develop their own PCHRs for their employees. We cannot afford to be asleep at the wheel. Before they hit prime-time, we need to think about what is at stake and what has to happen -- including regulations and standards -- if PCHRs are to be used to the full extent of their potential," Kohane said.

More information

The U.S. Agency for Healthcare Research and Quality explains how you can keep track of your health care.



-- Robert Preidt



SOURCE: New England Journal of Medicine, news release, April 16, 2008


'/>"/>
Copyright©2008 ScoutNews,LLC.
All rights reserved

Related medicine news :

1. Penn study finds pro-death proteins required to regulate healthy immune function
2. UCLA researchers identify markers that may predict diabetes in still-healthy people
3. Air pollution linked to cardiovascular risk indices in healthy young adults
4. More proof needed of safety and quality of electronic personal health records
5. Health care incentive model offers collaborative approach
6. Loneliness is bad for your health
7. Mailman School of Public Health study examines link between racial discrimination and substance use
8. Green Tea May Brew Up Healthier Skin
9. For Health Info, Women Often Turn to the Web
10. Record Number of Americans Lack Health Insurance
11. U.S. Research Funding Continues to Flatten as U.S. Health Costs Climb - in August 31 Science
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:4/26/2017)... Hackensack, N.J. (PRWEB) , ... April 26, 2017 ... ... fluency, Inc. in Hackensack, N.J. has been honored by Enterprising Women magazine ... program that recognizes the world’s top women business owners. Winners have demonstrated that ...
(Date:4/26/2017)... ... 2017 , ... RawTrition now brings you BioEnergy which is a powder capsule ... , RawTrition is taking nutrients to the next level! The superfoods in ... raw form (unlike the synthetically made options that are on the market). , Founder ...
(Date:4/26/2017)... FL (PRWEB) , ... April 26, 2017 , ... ... and human performance, is proud to announce that it has received 510(k) clearance ... technologies, the MyoCycle Home and the MyoCycle Pro. , Both devices are stationary ...
(Date:4/25/2017)... ... April 25, 2017 , ... ... Newport Beach, California, committed to raising awareness for Duchenne muscular dystrophy, and ... its randomized CAP-1002 (cardiosphere-derived cells) Phase I/II HOPE clinical trial in Duchenne ...
(Date:4/25/2017)... ... 2017 , ... The doctors at Wall Centre Dental are now expanding their ... require sedation to receive dental care. The doctors offer three treatment options to put ... to oral surgery, at their dental office in Vancouver. Wall Centre Dental is currently ...
Breaking Medicine News(10 mins):
(Date:4/20/2017)... 2017  AbbVie (NYSE: ABBV), a global biopharmaceutical ... chronic hepatitis C virus (HCV) infected patients with ... compensated cirrhosis (Child-Pugh A) achieved sustained virologic response ... its investigational, pan-genotypic regimen of glecaprevir/pibrentasvir (G/P). These ... 12 weeks of G/P treatment without ribavirin. Patients ...
(Date:4/19/2017)... CRH) (NYSE MKT: CRHM) (the "Company"), announces that it will participate ... the Sheraton Hotel in Toronto, Ontario . ... is scheduled to present on Tuesday, May 2 at 10:00 am. ... the Board, Tony Holler will also attend the event. ... For more details about the ...
(Date:4/19/2017)... NEW YORK , April 19, 2017 /PRNewswire/ ... This report on the prostate cancer ... of the global market. Increasing prevalence of prostate ... as innovation in the development of new drugs ... hormone-refractory prostate cancer drug due to lesser side ...
Breaking Medicine Technology: