Health and Medical News and Resources

General interest items edited by Janice Flahiff

‘Revolutionary’ Findings Of Online Studies Should Be Interpreted With Caution

The studies are not necessarily representative of the population.
Also, some of the organizations involved sell your personal information you report to pharmaceutical and insurance companies!

 

From the 25th October 2012 article at Medical News Today

‘Direct to consumer’ research, using data obtained through increasingly popular online communities such as 23andMe, PatientsLikeMe and the Personal Genome Project, has methodological limitations that are known to epidemiological studies, including selection bias, information bias, and confounding. These limitations mean that the results and conclusions of research using these methods need to be interpreted with caution, according to a paper published in the journal PLoS Medicine***….

..

Studies relying on collections of self-reported data by self-selected participants raise critical questions that require further ethical analysis and public debate – for example, regarding the provision of adequate consent, the safeguarding of public trust, disclosure of commercial development of research results, and the sale of participants’ data to third parties.

“We worry that overstating the conclusions that can be drawn from these resources may impinge on individual autonomy and informed consent,” the authors say. “Only a responsible approach with realistic expectations about what can be done with and concluded from the data will benefit science in the long run.”

The authors argue that clarity regarding the benefits of research using solicited personal data is particularly important when the data collected are also used for other purposes, such as selling participants’ information to pharmaceutical and insurance companies.

“The potential for sharing participants’ data with third parties as well as the commercial uses of research findings should be disclosed more explicitly to participants prior to consent,” they conclude.

*** From the site

Summary Points

  • An increasing number of public/private initiatives are exploring novel ways of conducting scientific research, including the use of social media and online collection of self-reported data.
  • Research relying on collection of self-reported data by self-selected participants has known methodological limitations, including selection bias, information bias, and confounding.
  • Such limitations may mean that results and conclusions of research using data obtained through online communities need to be interpreted with caution, as further replication is often required.
  • The findings of research, including their potential actionability, should be communicated to participants in a way that is understandable, accurate, complete, and not misleading.
  • The potential for sharing participants’ data with third parties as well as the commercial uses of research findings should be disclosed to participants prior to consent.

Introduction 

An increasing number of public and commercial initiatives invite individuals to participate in scientific research via the internet (Table 1). People are asked to provide information about personal medical history, medications, physical traits and measurements, ethnicity/ancestry, lifestyle and environmental exposures, and to donate biological material, generally saliva or blood, for DNA analysis. Some initiatives, such as the Personal Genome Project, have been launched with the specific goal of conducting scientific research, whereas others perform scientific analyses using data that were at least partly collected for other purposes. For example, PatientsLikeMe is an online community where patients can share information on symptoms, health state, and treatments to learn from each others’ experiences, and the company 23andMe sells personal genome tests to individuals who want to learn their genetic risks of common diseases, carrier status of rare diseases, response to drug treatment, and ancestry. Data are collected predominantly through self-report online questionnaires and some initiatives offer the opportunity to make data accessible for the public. For example, the Personal Genome Project publishes anonymized data online and participants of PatientsLikeMe can choose to publish all data publicly available on the web or make data accessible only to registered users.

Strong claims regarding the benefits of research using these resources are often made in order to encourage individuals to provide personal (health) information. For example, 23andWe, the research arm of 23andMe “gives customers the opportunity to leverage their data by contributing it to studies of genetics. With enough data, we believe 23andWe can produce revolutionary findings that will benefit us all” [1]. PatientsLikeMe tells patients that sharing personal stories and health data does not only enable individuals to “put your disease experiences in context and find answers to the questions you have” but also gives “the opportunity to help uncover great ideas and new knowledge” [2]. But how valid are these claims? Can online data collection lead to major breakthroughs in health research? We worry that overstating the conclusions that can be drawn from these resources may impinge on individual autonomy and informed consent. Just as researchers must take care to accurately convey direct benefits to study participants (which, we argue, in these situations are often small), they should also describe the likely outcomes and known limitations of observational studies conducted using volunteers. Clarity regarding the benefits of research using solicited personal data is particularly important when the data collected are also used for other purposes (e.g., PatientsLikeMe may sell members’ information to pharmaceutical and insurance companies [2]), lest the allure of participation in a scientific study be used as a Trojan horse to entice individuals to part with information they might not otherwise volunteer…

 

 

October 27, 2012 Posted by | Health News Items | , , , , , , , | Leave a comment

Journal launches big series on “Big Food” and public health

English: Montage of images used to illustrate ...

English: Montage of images used to illustrate mission of PLoS Medicine (Photo credit: Wikipedia)

From the 25 June 2012 post by Gary Schwitzer at HealthNewsReview.org

The journal PLoS Medicine has begun to publish a series of articles –  “a multidisciplinary approach to exploring the role in health of Big Food, which we define as the multinational food and beverage industry with huge and concentrated market power.”  Excerpt of an editors’ note:

“The time is ripe for PLoS Medicine to shine a light on Big Food. Foremost, large food and beverage companies now have an undeniably influential presence on the global health stage. Whether it’s food company executives providing expertise at major conferences and high-level UN meetings or major global health funders lecturing on what nongovernmental organizations can learn from Coca-Cola, the perspectives and experiences of Big Food are shaping the field of global health. At the same time that their expertise is elevated in global health debates, food companies are rebranding themselves as “nutrition companies,” offering business acumen and knowledge in food science and distribution, and asserting authority over solutions to problems not just of food production but of malnutrition, obesity, and even poverty. The legitimization of food companies as global health experts is further fueled by the growing number of private-public partnerships with public health organizations, ostensibly designed to foster collaborative action to improve people’s health and wellbeing. And yet food companies’ primary obligation is to drive profit by selling food. Why does the global health community find this acceptable and how do these conflicts of interest play out?

Indeed, while problems of obesity and associated disease are dominating discussions and debates in health around the world, there’s a concomitant gulf of critical perspectives on the food industry’s role and competing interests. Despite PLoS Medicine‘s longstanding interest in the tobacco, pharmaceutical, and other industries in health, for example, we have paid relatively little attention to the activities and influence of food and beverage companies.”

Here are links to two pieces:

June 25, 2012 Posted by | Nutrition, Public Health | , , | Leave a comment

Reducing The Treatment Gap For Mental, Neurological, And Substance Use Disorders

WHO | World Health OrganizationMental Health Gap Action Programme logo

From the 17 November Medical News Today report

In this week’s PLoS Medicine, Shekhar Saxena of the WHO in Geneva, Switzerland and colleagues summarize the recent WHO Mental Health Gap Action Programme (mhGAP) intervention guide that provides evidence-based management recommendations for mental, neurological, and substance use (MNS) disorders.

This guide is aimed at reducing the treatment gap for MNS disorders, which is more than 75% in many low- and middle-income countries (LMICs). Further details and background material to the guide can be accessed on the WHO website:http://bit.ly/vKPSRF

The authors recommend that: “In the near future, further efforts should be made to introduce formal evaluations of the capability of [treatment] programs to induce relevant and persistent changes, and to generate useful insights on how implementation in [low- and middle-income countries] should be conducted to maximize benefit at sustainable costs.”

November 17, 2011 Posted by | Psychology, Public Health | , , , , , , , , | Leave a comment

   

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