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Big data and patient powered research
Lower Lobby - West
Big data and patient powered research
Patient Council PCORnet
Many disruptive technology and sociological factors today combine to allow patient powered research projects to take the helm at seeking solutions to the medical problems that impact patient lives. Patient... Read more


Many disruptive technology and sociological factors today combine to allow patient powered research projects to take the helm at seeking solutions to the medical problems that impact patient lives. Patient powered research is research that is driven by patients and holds their interests at the center. The technological forces that fuel these changes include the computer advancements that allow big data research, which draws upon the 3Vs: volume (vast data pools), velocity (quick research), and variety (types of data). In addition to being able to compile and analyze individual medical data on a large scale, these advances allow research to leave the ivory towers of academia and travel down the tributaries to patient organizations, which may hold the keys to the kingdom in big data—patient engagement and consent. 

Major shifts in our society also put the wind behind the sails of these changes.  These include the shift from paternalism in medicine toward the individual patient in the context of shared medical decision making as well as the recognition that the interests of medical stakeholders (such as pharma and insurance) are not necessarily aligned with effective healthcare.  Research traditionally steered by the interests of either pharma or researchers (“researcher” centered research) is now increasingly being held accountable to the interests of patients. 

Science itself, which depends upon the free market place of ideas, is moving toward open source publication. Patients are invited to be peer reviewers on Cochrane Collaboration evidence assessments and at journals such as the British Medical Journal.  The open data movement requires researchers to put their money where their mouth is by holding researchers accountable for the ability to replicate claims. Research required to be registered in advance mean unfavorable research can no longer be hidden on the shelf.

All of this leads down the road to the democratization of science. The most ambitious project in this space is the National Patient Centered Outcomes Research Network (PCORnet) which has:

  • Funded 18 Patient Powered Research Networks
  • Founded a Patient Council to deliberate on issues big data sensitive to patients such as privacy and data security
  • Placed a patient on both the Executive Committee and the Steering Committee
  • Developed a national research network

PCORnet is doing this in the context of looming political deadlines and in a learning system process, where the crew is essentially “building the airplane as they fly it”.  I describe PCORnet as being a tent city that emerged overnight.  One day research proposals from 29 organizations were funded, and the next a group of over 1,000 converged on central desktop to begin constructing a new research community.

One of the goals of PCORnet is to not only improve the way research is done, but to also transform the research culture from one that is expert centered to one that is patient centered. My role as the patient representative on both the Executive and Steering Committees and the Chair of the Patient Council at PCORnet is to be one agent of culture change.

Lorraine Johnson, JD, MBA, is a member of the Patient Engagement Advisory Panel of the Patient Centered Outcomes Research Institute (PCORI) as well as the patient representative of PCORnet Steering and Executive Committee for the National Patient Centered Clinical Research Network (PCORnet) and the chair of the Patient Council for PCORnet. She is the Co-Chair of the Steering Committee of Consumers United for Evidence-Based Healthcare (CUE), a national coalition of approximately 40 consumer advocacy organizations that seeks to improve the consumers’ ability to engage in and demand high quality healthcare. She is the Executive Director of LymeDisease.org (LDo), a non-profit 501(c)(3) serving the patient community nationally through advocacy, education and research. For the past ten years, she has been engaged in patient and consumer issues locally, nationally and internationally. This year she was a plenary speaker at the HTAi (Health Technology Assessments International) conference on the topic of patient engagement in research. Last year she was a plenary speaker at the Cochrane Colloquium addressing patient engagement in Cochrane assessments. She is the author or co-author of over 40 peer reviewed publications, most recently “Patient-Powered Research Networks Aim To Improve Patient Care And Health Research” (Health Affairs 2014).

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