Deans' stroke musings

Changing stroke rehab and research worldwide now.Time is Brain!Just think of all the trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 493 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It's quite disgusting that this information is not available from every stroke association and doctors group.
My back ground story is here:

Friday, April 7, 2017

But that’s the way we’ve always done it! Changing organizational culture in medical R&D

This is so true of our fossilized and decrepit stroke associations. But the boards of directors seem not to notice or care that they are fucking failures.
Many of the behaviors slowing faster progress in the discovery and development of new medical products are things that organizations everywhere have been confronting for decades, if not centuries – lack of effective communication and collaboration, silo-ization of information and expertise, incentives not aligned with the collective behaviors we want to see. What can the biomedical R&D ecosystem learn from the vast literature and learnings from outside the space about how to change organizational culture and behavior to build a more effective, efficient enterprise?
Speakers include:
  • Riley Ennis, Co-Founder and Chief Operating Officer, Freenome
  • Richard Hamermesh, Senior Fellow, Harvard Business School
  • Lyric Jorgenson, Deputy Director, Office of Science Policy, National Institutes of Health
  • Margaret Anderson, Executive Director, FasterCures, a center of the Milken Institute (moderator)


Culture change is more likely to occur if you treat it as a response to opportunity, not a response to failure. That seemingly simple but wise observation from Lyric Jorgenson, deputy director of the Office of Science Policy at the National Institutes of Health, captured the tone of a fascinating Webinar discussion titled “But That’s the Way We’ve Always Done It! Changing Organizational Culture in Medical R&D.” Jorgenson, Harvard Business School Senior Fellow Richard Hamermesh, and Freenome Co-founder and Entrepreneur Riley Ennis brought very different perspectives to the topic. But they agreed that opportunities created by advances in science and technology require change to “the way we’ve always done things” to maximize their potential. This change in scientific research could accelerate progress where decades of talking about the problems have failed.
Since our earliest days, FasterCures has been focused on the ways the culture of medical research can slow progress. We heard from the patient-driven venture philanthropies that became The Research Acceleration and Innovation Network their frustration that “culture eats strategy for breakfast” – or in this case, scientific progress. They saw lack of communication and collaboration and misaligned incentives as being significant drags on progress, as much as the state of the science, and they set out to do what they could as funders to address those cultural issues. “Change starts with small, visible successes that are built on quickly,” Hamermesh noted, and cited venture philanthropies like the Cystic Fibrosis Foundation and the Multiple Myeloma Research Foundation as organizations that have done exactly that.
Start small and build on success. Identify opportunities that can drive culture change. What else do we know about how change happens? Jorgenson cited her experience as deputy director of Vice President Joe Biden’s Cancer Moonshot saying, “A push from the masses plus a pull from a champion,” someone who will challenge people’s assertions about the way we’ve always done things and hold partners accountable, is key. She also acknowledged that a crisis can spark culture change, as happened with HIV/AIDS, but ideally is managed by strong leadership that can allay people’s concerns about the consequences.
Ennis cited how data drive change – and in an era in which we are inundated with data, that is certainly an opportunity. Ennis emphasized the need to have a certain amount of humility, understand why things are done the way they are, and respect the needs of your partners. But “the system needs to be more open-minded and data-driven,” said Ennis. He encouraged the biomedical R&D ecosystem to learn lessons from the technology sector about using real-time feedback loops to improve the quality of data and reduce iteration cycles. He also mentioned that “failure” can catalyze growth – for individuals, for organizations, and for science. This was echoed by Jorgenson when she appealed for a rethinking of how clinical trials can be shifted to a more adaptive, flexible system where we can fail fast and move on. Ennis also raised the utility of data technologies, like artificial intelligence and machine learning, in changing the rules of the game.
What elements of the biomedical R&D culture need to have the levers of change applied to accelerate progress? Several themes emerged across the speakers’ comments:
  • More sharing of data. The opportunity of precision medicine is upon us, said Hamermesh. But without large, broadly available datasets to drive insights, it will fail to become reality. “Let’s not have data hoarding,” he pleaded. Ennis advocated for centralizing data for queries. We may be swimming in data, but if we can’t aggregate, access, and analyze them, they don’t matter.
  • Greater diversity of experiences and perspectives. Hamermesh invoked the power of crowdsourcing to bring fresh expertise and ideas to solving biomedical research questions, asserting that “change will come from outside the system.” Jorgenson talked about the need to empower non-traditional partnerships and multi-disciplinary teams in order to crack the complexities of biology today. Additionally, we should give researchers training opportunities that expose them to other ways of thinking.
  • A person-centered approach. All speakers talked about the ways in which a focus on the individual patient and person will disrupt the way we do things. Hamermesh believes that when people understand their own health data, and share them with open datasets for research, a revolution will occur – a view that Jorgenson shared. Precision medicine is, of course, a person-centered endeavor. Ennis talked about the importance of removing complexity by focusing on the things people care about – making their data actionable and giving them real-time feedback that informs their choices impacting their health. Patient-reported outcomes are a critical feedback loop to improve data quality, in Ennis’s view. 
What incentives are needed to foster the changes in behavior we say we want to see?
  • Jorgenson hit on the need for institutions to reward researchers for data quality and methodological rigor with citations and recognition that build their careers. Data that are not of high quality, not shared, or not reproducible are not of high value to the enterprise. 
  • Individuals need to be incentivized and enabled to acquire, understand, and share their health data. Hamermesh cited lessons to be learned from direct-to-consumer businesses like Rent the Runway and Uber about engaging with and adding value for consumers. 
When asked by FasterCures’ Executive Director Margaret Anderson how we can accelerate culture change in medical R&D, all three speakers came back to the centrality of individual people and patients driving disruption in the system, as they have in so many other sectors. Hamermesh summed it up by saying, “Start by going directly to the patients. Free up their data, and they will change the system, ask better questions, and create a sense of urgency.” And Ennis put it simply, “Treat users as people, not patients.”

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