‘Patient organizations are catalyzing transformation’

If we could turn our fucking failures of stroke associations into a survivor organization we might finally get somewhere.
http://fastercures.tumblr.com/post/144150913374/patient-organizations-are-catalyzing

Q) How can patient organizations take advantage of this transformation of the industry?

Patient organizations have a critical role to play in catalyzing this transformation, especially with respect to the collection of data. Whoever holds the data controls innovation. In the past, only large companies could afford to fund clinical trials where much of the patient data were collected. Patient groups are now able to collect data on their own cohorts of patients and organize them in their own registries to help crack the scientific and medical challenges that are the focus of each organization.
Tens of thousands of data collection apps and devices are already available, and tools to analyze those data are multiplying and getting ever more powerful. The aggregation of those data will attract researchers to diseases—especially rare diseases—that have not received great attention in the past. Additionally, patient organizations and research consortia can emulate virtual pharma companies and engage in translational research themselves.
As the industry becomes more heterogeneous, patient organizations will have more opportunities to engage with industry. Big firms will still exist, and the successful ones will be reaching out, as they actively manage for innovation, instead of just bigger size. Smaller companies will also be looking for ways to partner with stakeholders to further their low-cost innovation model.
The next few years will likely be turbulent for the industry. Patient groups can help with this transition by organizing the large-scale collection and mining of patient data, and use the resulting insights to seed the industry pipeline with opportunities that will help provide more, better and cheaper innovation.