“Your Story Matters” at Harvard

Harvard University has been running an open-access repository for many years. It’s called DASH (Digital Access to Scholarship at Harvard).

Today they’re launching Your Story Matters, a collection of many hundreds of short testimonials of how free access to Harvard researchers’ publications has helped state legislators, TV producers, community-college lecturers, preachers, high-school teachers, parents of autistic children, dieticians and many, many others do their jobs more efficiently and more effectively.

As Peter Suber says:

These stories volunteered by the users of our open-access repository are the best evidence that OA serves real people with real needs, that OA meets unmet demand, that the demand unmet by conventional journals includes academic and non-academic readers.

It’s great that this site is now online, helping us to appreciate some of the vast opportunity cost of keeping research locked behind paywalls.

Niek Huizenga, young entrepreneur and IT specialist

Niek Huizenga is a Dutch entrepreneur, 30 years young, (almost) married and living in Groningen (the Netherlands). During his  studies — BSc. in IT and MSc. in Business & Economics — he started several businesses. He divides his time between studying and working in the Netherlands and working in various African countries.  We talked to him about his strategies for finding information, the usefulness of open access, and the difficulties that people in Africa experience finding the right information.

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Christy Collins, mother and M-CM patient advocate

What is M-CM?

M-CM stands for macrocephaly-capillary malformation. It is a rare genetic syndrome first identified by researchers in 1997.

Could you tell us a little about the M-CM Network and how it was formed?

When my daughter, Signe, who is now 2 and a half years old, was diagnosed with M-CM, there was already a strong patient support community online facilitated by a family in England. The Internet and social networking largely solved the problem of connecting patients to each other without the need for a formal organization or fundraising.  Because peer support was taken care of, our own organization was founded to accelerate research and make it easier to get clear, reliable information about M-CM.

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AnnMaria De Mars, small business founder

AnnMaria De Mars is President and founder of the Julia Consulting Group based in Santa Monica. She’s worked in both academia and business. We talked to her about how access to research affects her consulting business, and her reaction to the Research Works Act

Could you tell us a little about the Julia Group and what you do?

We mostly do statistical consulting, contracted research and customized programming. We were originally a satellite office of Spirit Lake Consulting, Inc., founded around 2000. We spun off as a separate company in 2008.

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Mark Bisby, research advisor and advocate

Mark Bisby is an ex-professor, ex-civil servant. He ran his own lab in physiology and neuroscience for 25 years, and then joined the Medical Research Council of Canada just before it transitioned into the Canadian Institutes of Health Research (CIHR), where he became VP Research. There, beyond his own specialty knowledge, he learned a great deal about the importance of other approaches to health research such as population health, and health services research.  Mark retired six years ago, but like so many people seems to have been just as active since!  We asked him how he’s using his broad knowledge and experience. Continue reading →

Alistair Scott, knowledge manager for aid and international development

The Institute of Development Studies (IDS), based in the UK, is a leading global charity for international development research, teaching and communications.  Alistair Scott is an Information Systems Manager with its Mobilising Knowledge for Development (MK4D) programme.

Alistair explains what they do:

We work with partners in developing countries to build a bridge from research to policy and practice.  We do this by delivering open access information products and services such as Joto Afrika – an East African briefing series on Climate Change Adaptation which was developed jointly between ourselves and the Kenyan organisation ALIN (Arid Lands Information Network).

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BJ Nicholls, fossil preparator

In his professional life, BJ Nicholls is an advertising designer; but in his spare time he, along with is wife Lori, is a volunteer fossil preparator at the Natural History Museum of Utah.  What does that entail?

Most fossil discoveries require a tremendous amount of preparation work after a specimen is excavated.  Fossils are typically brought back to preparation labs with little of the fossil exposed.  We’ve been trained to remove the surrounding rock (called matrix) and to stabilize fossil bones that are often in very poor condition.

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Eric Johnson, patent facilitator and cancer survivor

Eric Johnson is an engineering professional working as a patent facilitator for a multinational company. One of his jobs is to find information and “connect the dots” related to intellectual property of competitors, to develop research strategies for his company. He is also a multiple occurrence Testicular Cancer survivor who used the medical literature to research his condition and inform his treatment.

I do not believe I would be alive today if it were not for the information that can only be accessed by the layman (patient) in online sources.

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Wayne Wells, veteran, cancer patient and research reviewer

Wayne Wells is a 68 year old male, a Vietnam veteran and small business owner living in Cameron NY, he is also an Atlatl (spear-thrower) enthusiast and pursues canoeing and X-countryskiing.

Wayne at an Atlatl competition in 2008

He was forced into retirement in 2006 due to diagnoses with a cryptic form of aggressive CLL (Chronic Lymphocytic Leukemia) which the Department of Veteran Affairs has determined was caused by exposure from Agent Orange during his service in the Vietnam war.

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Kelly Trout, nurse and independent researcher

Kelly Trout is a registered nurse by profession.  She is also a leader of a small nonprofit organisation called the International WAGR Syndrome Association, and the parent of an adult with WAGR/11p Deletion syndrome.  This is an extremely rare disorder — fewer than 500 cases have been identified worldwide.  The primary features are Wilms tumor (a type of kidney cancer), Aniridia (absence of the iris), Genitourinary tract abnormalities, and intellectual disability.

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