Data Sharing for Research & Care

MS-DOS Green 1 - Kjetil KorslienBlog post by Janet Freeman-Daily & Colin Hung

The President’s Cancer Panel (PCP) 2014-15 workshop series, Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes, aims “to answer timely, critical questions about connected health strategies and technologies and their potential to engage and activate individuals and patients, with the ultimate goal of improving cancer-related outcomes.” Their December 2014 workshop had an impressive list of speakers and participants.

The next workshop will be held in San Francisco on March 26, 2015, and will focus on “The Personal Health Data Revolution, Connected Health, and Cancer.” It will touch on several topics of interest to the #hcldr community: value of patient networks, ownership of patient-generated data, changing the research process, using electronic health records for the benefit of patients, and privacy and security safeguards.

The value of patients sharing data with researchers is being explored by the new Apple ResearchKit. One of the first uses of the devices will be the Share the Journey app for breast cancer research. However, some in the IT space are asking Can Apple’s ResearchKit Really Change Medical Research?  It’s an interesting question.

Would you be willing to share your PHD with researchers - RWJF - 2014In 2014, the Robert Wood Johnson Foundation published the results of a fascinating survey on people’s sentiment towards sharing Personal Health Data (PHD). Over 78% of respondents answered “Probably Would” or “Definitely Would” when asked if they would be willing to share personal health and activity data with researchers.

However, there was a significant negative bias towards sharing PHD with commercial or profit-making enterprises. Comments included:

“I do not want my data to be shared commercial at all”

“NOT EVER for a company to make $$$”

“Yes, if it was for research purposes, then I’d be interested. If it’s for a private agency which is attempting to monetize something about me, then I have no interest.”

Clearly there is a not a lot of trust when it comes to commercial entities using health information [Note: Trust in Healthcare & Science was last week’s #hcldr topic]. Yet the more data we share, the more we advances can be made in medicine, treatments and prevention. So how can we build a mechanism through which data can be shared, with patient consent, in a way that benefits everyone without sacrificing an individual’s right to privacy ? Can such a utopia be achieved?

A member of the #hcldr community, Janet Freeman-Daily, has been invited to attend the March 26 PCP Workshop as a patient advocate.  To help her gather inputs for this meeting, our #hcldr chat on March 17th at 8:30pm EDT (GMT-5 – for your local time click here) will brainstorm on topics to be discussed at the workshop.  Specifically, we will address the following questions:

  • T1 How will healthcare change if patients & their chosen HCPs had complete & open access to pt health records as well as device data?
  • T2  What personal data would you be willing to share with healthcare researchers? Ideas for controlling that access?
  • T3 If patients & researchers could easily exchange personal health data, how might cancer & other research/outcomes change?
  • T4 What needs to happen/what can we do to increase sharing of healthcare data between patients, HCPs & researchers (especially for cancer)?

Resources

“Connected Health: Improving Patients’ Engagement and Activation for Cancer-Related Health Outcomes”, President’s Cancer Panel 2015, http://deainfo.nci.nih.gov/advisory/pcp/glance/ConnectedHealth14-15.pdf, accessed March 13 2015

“Engaging Patients with Connected Health Technologies”, President’s Cancer Panel 2014, http://deainfo.nci.nih.gov/advisory/pcp/pcp1214/agenda.pdf, accessed March 13 2015

“The Personal Health Data Revolution, Connected Health, and Cancer”, President’s Cancer Panel 2015, http://deainfo.nci.nih.gov/advisory/pcp/pcp0315/infoFlyer.pdf, accessed March 13 2015

BreastCancer.org email announcement, 2015, http://support.breastcancer.org/site/MessageViewer?AddInterest=1062&dlv_id=19322&em_id=16961.0, accessed March 13 2015

“Can Apple’s ResearchKit Really Change Medical Research?”, Marcus Woo, Wired Magazine, March 10 2015, http://www.wired.com/2015/03/can-apples-researchkit-really-change-medical-research/, accessed March 13 2015

“The President’s Cancer Panel Wants…Me?”, Janet Freeman-Daily, Cure Today, March 11 2015, http://www.curetoday.com/community/janet-freeman-daily/2015/03/the-presidents-cancer-panel-wants–me, accessed March 13 2015

“Accessing and Using Data from Wearable Fitness Devices”, Harry Rhodes, Journal of AHIMA, September 2014, http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_050743.hcsp?dDocName=bok1_050743, accessed March 13 2015

“Senator wants curbs placed on fitness data use”, Jaikumar Vijayan, ComputerWorld, August 11 2014, http://www.computerworld.com/article/2491050/mobile-apps/senator-wants-curbs-placed-on-fitness-data-use.html, accessed March 13 2015

“Health researchers see unique opportunity in self-tracker data”, Brian Dolan, Mobihealth news, March 13 2014, http://mobihealthnews.com/30979/health-researchers-see-unique-opportunity-in-self-tracker-data/, accessed March 13 2015

“Personal Data for the Public Good”, Robert Wood Johnson Foundation, March 2014, http://www.rwjf.org/content/dam/farm/reports/reports/2014/rwjf411080, accessed March 13 2015

Image Credit

MS-DOS Green 1 – Kjetil Korslien

https://www.flickr.com/photos/kjetikor/8483012099/in/photolist-dVBDXi-FNvvJ-brJUQ-nCEwS

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: