By bluerasberry on 2015-10-29
On Wednesday 28 October I attended a half-day of a two-day conference on “expanded access” at the New York Academy of Science. Johnson & Johnson sponsored the event and I felt that what I saw was guided by their pharma influence. “Expanded access” is a term referring to a pharma company’s provision of an experimental […]
Posted in clinical research, health, New York City, research, rights | Tagged clinical research, safety
By bluerasberry on 2015-04-05
The New York Times just published “Using Patient Data to Democratize Medical Discovery“. The article talks about activity trackers and Apple’s software suite for reporting health information to Apple devices. It links to the story of a patient named Steven Keating who benefited from having his own health records. Keating’s “The Healing Power of Your […]
Posted in clinical research, health, research, rights | Tagged activity tracking, privacy
By bluerasberry on 2014-07-27
After meeting Nick at home I started thinking to myself about what projects I am doing which relate to large data sets so that I could see the extent to which I had some ground for collaboration with him and others in this space. My primary pursuit is public is facilitating public access to information, […]
Posted in clinical research, health, Open access, quantified self, Wikipedia | Tagged activity tracking, big data
By bluerasberry on 2014-04-17
Like everything on this blog, this post is my own personal candid thoughts. I visited an organization working in a similar space as Consumer Reports, and in this post I say some things about me, my organization, and this organization. This post is intended to be entirely positive about everything I saw, because I felt […]
Posted in Boston, clinical research, Consumer Reports, drug, health, non-profit, research, rights | Tagged electronic medical records, privacy
By bluerasberry on 2014-04-05
Speakers at the conference who talked about international expansion of research said that China was the next big thing and said that India has an odd and uncertain future as it matures in its international relationships. Right now 95% of people in China are covered by at least some minimal type of health insurance policy. […]
Posted in China, China, clinical research, drug, health | Tagged conference
By bluerasberry on 2014-04-05
I was invited to speak at the conference on Tuesday 1 April. I was on a panel called “Partnering with Patients: What do you need from each other?” The description to the talk asked, “When it comes to engagement in clinical trials, are pharmaceutical executives getting it right or are we leaving a huge amount […]
Posted in clinical research, drug, health, Las Vegas, presentation, Wikipedia
By bluerasberry on 2014-04-04
I am at the Partnerships in Clinical Trials conference in Vegas. I am attending all the talks I can about outsourcing clinical research, and especially about China. These are notes and industry gossip; no fact checking has gone into what I am typing here but obviously the people who are presenting are speaking as insiders […]
Posted in China, clinical research, research | Tagged conference
By bluerasberry on 2014-02-10
Elsewhere I talk about clinical research. Suppose that a research participant wants information about a clinical trial. What types of information would this person want? I was thinking to model information types as follows: Logistical information Research participant rights Health information Information about the particular clinical trial Logistical information refers to all the metadata about […]
Posted in clinical research, drug, education, health, rights | Tagged pharma
By bluerasberry on 2014-01-11
Wikipedia could be used as a channel for conducting and managing information requests. This has not been done previously. I would like for it to be done in the future. This post is three of three in a series, and this one talks about Wikipedia and information requests. In other posts I describe MuckRock as […]
Posted in biobanks, clinical research, research, Wikipedia | Tagged informed consent
By bluerasberry on 2013-10-16
On Friday 4 October I went to Seattle and returned Sunday 13 October. I wanted to visit friends and have coffee. On 5 October Lee and I went to the zoo to visit animals. It felt good to go there but I was very tired. I missed Lee a lot. I went to Evan’s place […]
Posted in clinical research, Open access, Portland, research, Seattle | Tagged Brian Glanz, Christian, Cyan, Evan, Jason, Jonathan, Kelly, Lee Haertel, Mark, meetup, PATH, Patrick, Roman