A panel of experts joined Steve Clemons, The Atlantic’s www.theatlantic.com Washington Editor, to discuss their ideas on how to move forward in the digital age as it relates to healthcare.
The panel discussion “The Digital Patient: Data and the Future of Health Care” underwritten by GSK www.gsk.com, looked at how patients can effectively use data and information to make critical decisions often required to obtain effective medical care.
Donna R. Cryer CEO for the Global Liver Institute www.globalliver.org has faced a number of serious health issues in her life. As a result, she is vocal on making it easier for patients to control their data and to understand how the data is being used. She wants the medical community to use the “expertise in me”
According to Marci Nielsen M.D, CEO for the Patient-Centered Primary Care Collaborative www.pcpcc.org, when patients get a disease that doesn’t have easy answers, very often they start doing research so they will have all of the information they need at their fingertips. As a result, they become active in organizations and become leaders in advocating for change.
Stephen Smith, Chief Patient Advocate, for Medidata Solutions Worldwide www.mdsol.com discussed the problem of getting medicines for a rare disease for his son who was thirteen at the time. The medicine was not yet approved but later it was approved in 2014.
He is critical of FDA www.fda.gov in terms of information, because patients and family members aren’t consulted on new medications and the approval timetable. As Smith points out, there needs to be collaboration with everyone involved from the patient, caregivers, and the medical community. Information need to be shared across all institutions to get drugs approved sooner.
He added, “It is important for government, pharma, and patient advocates to examine data, report their thoughts, so that FDA could benefit from the information that might result in approvals happening sooner. For example, HIV/AIDS advocates were able to create change 15 years ago which greatly helped the HIV/AIDS community.”
Christopher Boone, CEO, of the Health Data Consortium (HDC) www.healthdataconsortium.org a public private partnership, reports that HDC is working very hard to make health data available to all. HDC especially wants to hear from all interested parties on topics such as open source in health, precision medicine, open science, and on wearables and trackers. The goal to bring everyone into the discussion so that enough information and knowledge is in place and silos of data are eliminated.
All of the panelists agree that privacy is an important issue related to the utilization of data. Several of the panelists think that hospitals very often use HIPAA as a shield and often HIPAA is misinterpreted. All are in agreement that privacy is vital but at the same time, there needs to be a balance between privacy and the release of data on patients.
Representing the Federal government side, Niall Brennan, Director and CMS www.cms.gov, Chief Data Officer, explained how CMS sites on huge amounts of inclusive data which can be of great value to all parties involved in the population CMS serves. If used efficiently, the data can be used to point out price disparities, variations in some geographic areas on hospital charges, and future deliverables.
He reports, “CMS is working very hard to get the right data to the right people in the right format. The claims data collected by CMS needs to be made more user friendly to better serve the population.
The problem is that sometimes information goes to people with different interests so the result is that not all professionals in healthcare and medicine view the claims data in the same way. Also, the data needs to serve other stakeholders such as pharmaceutical companies to help develop new treatments.”