“…..here’s the thing: if I give my song away to 20 people and they give it to 20 people, pretty soon they know me and my value as a creator is dramatically enhanced.”
“The best way to raise demand for your product is to give it away.”
Both of these quotes, which I used to open my presentation at this year’s North American Interchange, were from John Perry Barlow--- the first as the lyricist for The Grateful Dead in the ‘70s and the second for Wired Magazine in 1994. Oddly enough, the Dead’s influence on the business world may turn out to be a significant part of its legacy. “The Dead were masters of creating and delivering superior customer value. One [idea] was to focus intensely on its most loyal fans. In a recession, strategic improvisation is more important than ever. If you’re going to survive this economic downturn, you better be able to turn on a dime. The Dead were exemplars.” This information is from an article in The Atlantic (March 2010) in which Joshua Green interviews Barry Barnes, a business professor, and explores “Management Secrets of The Grateful Dead”. In particular, the article is on creating value.
The CDISC standards can be compared to the Dead’s songs in that CDISC standards are open and freely available to anyone around the globe. In fact, the CDISC Intellectual Property Policy is structured to protect the standards as free and open IP, which belongs to CDISC---so that it can be kept open and free. That being said, CDISC standards development and maintenance (as for the band) have associated costs. To protect the standards and continue to add value for its most loyal fans, CDISC must ensure a sustainable business model, particularly during an economic downturn.
For 2008 and 2009, CDISC dipped into its reserves, which were fortunately available from the prior 8 years that CDISC was incorporated. However, of course, this is not sustainable nor is it a good business model. In addition, CDISC is being requested to do additional work to ensure that the standards are acceptable and robust for regulatory use, and the CDISC stakeholders and FDA are calling for augmentation of the standards to include “efficacy data” standards in a multitude of therapeutic or disease areas (which is also why the CDISC SHARE project was officially launched last year). Hence, CDISC Operations has invested significant energy this year in exploring its revenue streams, which have indeed been diversifying over the years and need to diversify even more.
This year, in particular, CDISC has:
- increased grant opportunities through its participation in the ONC Strategic Health and Research Projects – SHARP area 4 with Mayo and Intermountain Healthcare and through various grants and contributions for development of standards in therapeutic areas (cardiovascular, polycystic kidney disease, Parkinson’s and Alzheimer’s diseases);
- expanded the reach of educational courses, now educating FDA CDER and CBER reviewers and NIH- National Institute of Child Health and Development while adding new courses and tutorials taught in numerous countries around the globe;
- been included in the contract awarded for an FDA Legacy Data Conversion project (awarded to Octagon and ScenPro) to develop new standards as needed;
- expanded collaborations and partnerships such as the one with the Critical Path Institute, through which we will be bringing on CDISC staff in Arizona.
While diversifying and adding new revenue streams, CDISC has also been evaluating current major revenue streams--- education and membership. In addition to expanding its reach, CDISC has significantly increased revenue to CDISC from its educational programs---not by increasing rates but rather through the hiring and activities of a Director of Education. The CDISC Financial Oversight Committee (FOC) and Board, with the assistance of a summer student intern, have also looked closely at the Membership model that CDISC implemented 10 years ago when it was incorporated. Two prominent issues are: 1) the loss of potential revenue for CDISC due to corporate mergers over the last decade and 2) the current levels based by number of employees in an organization.
The FOC recommended to the Board that a new structure be put into place for Membership to accommodate changes that we have seen over the past decade within the industry as well as observations that are clear from the existing 10-year old membership structure. Specifically, it has become increasingly clear that there are small organizations of under 20 employees that want to join, that there are now many organizations with well over 100,000 employees and that there is no real need to split levels between 100 and 1,000.
The new structure will be rolling out in 2011. Prior to the roll-out, there will be additional reviews of the new levels, pricing structure and benefits by the CDISC Executive Committee, the CDISC Board and select CDISC Advisory Board (CAB) members. The new levels will have new names to better reflect the various types of organizations that comprise CDISC members. There will be an increase in dues by some levels, along with better benefits based upon what can be seen as value to the CDISC members. Others may possibly see a lower fee or no change at all. Regardless, it is the hope of CDISC that members continue to enjoy the value of CDISC ---through the standards themselves and other CDISC innovations.
CDISC is truly more than Standards! CDISC has focused on improving the overall process of medical research through not only standards, but also workflow integration (Healthcare Link Initiative), decreasing resources and costs of doing research, for example, when using “Standards from the Start” such as CDASH and the new Protocol Representation standard. A new course has been developed “A Global Approach to Accelerating Medical Research”. This course was delivered gratis to interested CAB members on 2 November and to others who attended the Interchange. Even more importantly, CDISC is providing value to patients through its work to develop efficacy standards and through its participation in initiatives (such as the ONC-sponsored Institute of Medicine workshops on an Electronic Infrastructure for a Learning Healthcare System) to help shorten the timeframe by which research results can inform healthcare decisions.
In this light, I was very pleased to close with the new CDISC Vision, which was just approved by the Board (to augment the CDISC mission statement) on 1 October 2010:
Informing patient care and safety through higher quality medical research
This Vision speaks to the very heart of what we do at CDISC and its sentiments convey the passion for what we do and how we see the future, with your continued support across all our activities: through membership, through the teams, through being strong advocates. We thank you all, and look forward to you joining us on our continuing journey.
Share your thoughts with us here by commenting on the Blog or email your comments to me at CDISC.
Dr. Rebecca Kush
CDISC CEO & President
Eric Glassman