It’s All About the Patients

Whenever you are designing something new you always have to keep in mind who the end user is. You can make something that works perfectly fine for you, but if it doesn’t work for the people who are going to work with it day in and day out, you have been wasting your time. And their time too.

At California Institute for Regenerative Medicine (CIRM), our end users are the patients. Everything we do is about them. Starting with our mission statement: to accelerate stem cell treatments to patients with unmet medical needs. Everything we do, every decision we make, has to keep the needs of the patient in mind.

So, when we were planning our recent 2020 Grantee Meeting (with our great friends and co-hosts UC Irvine and UC San Diego) one of the things we wanted to make sure didn’t get lost in the mix was the face and the voice of the patients. Often big conferences like this are heavy on science with presentations from some of the leading researchers in the field. And we obviously wanted to make sure we had that element at the Grantee meeting. But we also wanted to make sure that the patient experience was front and center.

And we did just that. But more on that in a minute. First, let’s talk about why the voice of the patient is important.

Some years ago, Dr. David Higgins, a CIRM Board member and patient advocate for Parkinson’s Disease (PD), said that when researchers are talking about finding treatments for PD they often focus on the dyskinesia, the trembling and shaking and muscle problems. However, he said if you actually asked people with PD you’d find they were more concerned with other aspects of the disease, the insomnia, anxiety and depression among other things. The key is you have to ask.

So, we asked some of our patient advocates if they would be willing to be part of the Grantee Meeting. All of them, without hesitation, said yes. They included Frances Saldana, a mother who lost three of her children to Huntington’s disease; Kristin MacDonald, who lost her sight to a rare disorder but regained some vision thanks to a stem cell therapy and is hoping the same therapy will help restore some more; Pawash Priyank, whose son Ronnie was born with a fatal immune disorder but who, thanks to a stem cell/gene therapy treatment, is now healthy and leading a normal life.

Because of the pandemic everything was virtual, but it was no less compelling for that. We interviewed each of the patients or patient advocates beforehand and those videos kicked off each session. Hearing, and seeing, the patients and patient advocates tell their stories set the scene for what followed. It meant that the research the scientists talked about took on added significance. We now had faces and names to highlight the importance of the work the scientists were doing. We had human stories. And that gave a sense of urgency to the work the researchers were doing.

But that wasn’t all. After all the video presentations each session ended with a “live” panel discussion. And again, the patients and patient advocates were a key part of that. Because when scientists talk about taking their work into a clinical trial they need to know if the way they are setting up the trial is going to work for the patients they’re hoping to recruit. You can have the best scientists, the most promising therapy, but if you don’t design a clinical trial in a way that makes it easy for patients to be part of you won’t be able to recruit or retain the people you need to test the therapy.

Patient voices count. Patient stories count.

But more than anything, hearing and seeing the people we are trying to help reminds us why we do this work. It’s so easy to get caught up in the day to day business of our jobs, struggling to get an experiment to work, racing to get a grant application in before the deadline. Sometimes we get so caught up in the minutiae of work we lose sight of why we are doing it. Or who we are doing it for.

At CIRM we have a saying; come to work every day as if lives depend on you, because lives depend on you. Listening to the voices of patients, seeing their faces, hearing their stories, reminds us not to waste a moment. Because lives depend on all of us.

Kevin McCormack,
Senior Director Public Communications & Patient Advocate Outreach, CIRM

Browse more programs in Patient Perspective – CIRM Grantee Meeting 2020.

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Big Ideas: Election 2020

This fall we have the quadrennial opportunity to study American politics during a presidential campaign. Combining real-time analysis of the election campaigns, an in-depth study of the relevant historical context, and a lively roster of guest speakers from academics and social movements, this twice a week class taught by two UC Berkeley professors provides an interdisciplinary introduction to American politics in a time of unprecedented crisis and possibility.

Michael Mark Cohen, American Studies and African American Studies, and Saru Jayaraman, Goldman School of Public Policy, take you through the day-to-day flow of the 2020 campaign, taking on everything from polling data and social media coverage, the COVID-19 pandemic and the waves of social protests, to the presidential debates and the final vote tallies. While the presidential election will hold center stage, they will also explore politics from a local, state wide and international level.

New programs are added every Monday and Wednesday evening. Each session begins with a lively, up-to-the-minute discussion of the latest events in the race. From there, delve into the sources of these current events. Each Wednesday features a guest speaker; specialists, academics and social movement leaders from across the campus, the Bay Area and the world offer their expert insight into our political system.

This election, and this moment of crisis, will define the future of American democracy. And in this class, we will examine this turning point as it happens.

Browse more programs in Big Ideas: Election 2020.

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Other Possibilities

Writer-Director Darya Zhuk’s debut film Crystal Swan (2018) centers around Velya, a young woman seeking to escape the miserable conformity of life in Belarus in 1996. Velya is an aspiring DJ whose house music provides some much-needed escapism, but like many others her age she dreams of fleeing to America—or perhaps more accurately, a fantasy America where every teen has their own bedroom and cell phone and parents knock before they enter. That’s not Velya’s life in Minsk, where she must contend with an overbearing mother, little money, few job prospects, and the general post-communism malaise.

In this “tragic comedy” Velya schemes to obtain a visa from the American embassy, which involves faking a work phone number and other machinations. Velya learns to her dismay that the embassy intends to call that number to verify her employment and other details. Through a series of misadventures she ends up spending the next two days with the dysfunctional family that actually owns the telephone number, trying to convince them to lie for her when the embassy calls. As you might expect, the presence of a weird girl from Minsk trying to use the family so she can flee to Chicago leads to an increasing number of complications, not all of them comic.

In the best tradition of Eastern European literature and cinema, Zhuk tells a tale of desolate realism colored by farcical and absurdist elements (think Good Soldier Svejk or Milos Forman). Her film is set at a time of turmoil in Belarus, as the fledgling post-Soviet democracy succumbed to dictatorship. This ethos is mirrored in Zhuk’s protagonist, a young woman faced with a bleak future if she doesn’t make a run for it, and quickly. In telling her story Crystal Swan makes astute use of mid-1990s iconography; pre-digital cameras and phones (including phone booths), large posters on teenagers’ walls, cassette mix tapes handed from person to person, VHS tapes that jam in the VCR, and a pervasive, almost repressive, sense of materiality. It’s as if the accumulation of mundane objects provides an antidote to the wretchedness of everyday life. When these objects break down or lose their allure our heroine is forced to seize other possibilities.

As the film charts its course from the ironies and absurdities of the opening scenes to a bracing grittiness, it makes no guarantees for Velya’s successful escape nor for her happiness if she does. Darya Zhuk made her own successful escape and is now based in New York City, where she attended Columbia University, and Crystal Swan reflects memories of her own immigrant hopes as inextricably mingled with the uncertainties of forging a new life in a strange country.

Watch Crystal Swan Director Darya Zhuk.

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The Post-COVID Economy

The global economy has been ravaged by a significant decline in consumption, leading to a challenging business environment. Some companies are struggling to survive while others are taking advantage of new opportunities. What are senior industry leaders seeing from their perspective?

To understand this environment, this exclusive series of webinars from the UC Davis Graduate School of Management features panels of prominent executives and alumni who share career insights and experiences as well as their outlook in key business fields, such as finance, technology, business development and supply chain logistics.

Browse more programs in UC Davis Graduate School of Management’s Dean’s Distinguished Speaker Series.

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Oceans Out of Breath

Scripps climate scientist Yassir Eddebbar takes you on an exploration of the ocean’s interior to reveal a fascinating phenomenon – oxygen minimum zones (OMZs).

Oxygen minimum zones (OMZs) are regions of the global ocean that present low dissolved oxygen concentrations. Although they represent only a small fraction of the global ocean volume, they are considered to be an important sink for fixed nitrogen, contributing 30-50% of the oceanic nitrogen removal. They are important sources of the greenhouse gases carbon dioxide (CO2) and nitrous oxide (N2O), the latter also involved in the destruction of stratospheric ozone.

Focusing on his work in the tropical Pacific, Eddebbar explains what causes OMZs, how they are likely to change in response to climate change, and their potential to impact marine ecosystems and fisheries as climate warms.

Watch Oceans Out of Breath: Oxygen Minimum Zones in a Warming Climate.

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