Collaboration Will Define Healthcare's Future: A Recap of Stanford Medicine X 2014

Stanford Medicine X, the annual event in its 4th year, aims to innovate healthcare at the intersection of emerging technologies and medicine by connecting patients, providers, technologists and researchers.


The "X" is meant to encourage thinking beyond numbers and trends, and symbolizes the infinite possibilities for current and future information technologies to improve health. But what makes the conference especially unique is that patients aren't just invited to attend, they’re fundamental to its DNA.

More than talking about their experiences, "ePatients" (expert patients) contribute their perspective to almost every conversation. Nick Dawson, president elect of the Society for Participatory Medicine, explained, this type of "participatory medicine" where patients participate in the design of tools, processes and medications, needs to be invited, solicited and recognized as essential to figuring out how to build things that work for real people.

 

Attended by more than 650 people and watched via live webcast by several thousand more, the event has historically examined how social media, mobile-health devices and other technologies like information management can positively affect the caregiver-patient relationship. This year, the sessions also incorporated insights born from the emergence of new partnerships between the various groups and how they would define healthcare's future. Throughout these discussions, a number of key themes emerged over the course of the conference, including engagement, empathy and the importance of treating the whole person, all driven by answering the underlying question of "how can technology be incorporated?"

With that in mind, below is an overview of a few key sessions that captured the overarching themes and thought-provoking discussions.

Patients' and technology's influence on the new pharma
Historically, the relationship between the pharmaceutical industry and patients has been extremely regulated, causing communications to be very limited. In current times, pharma has much of the budget to do innovative R&D, while the rise of technology has allowed a new level of patient involvement and feedback.

Matthew Charron, an ePatient panelist with Crohn's disease, cited his own experiences, "Right now, something like 50 percent of clinical trials are never published, especially negative results. I want to know everything I possibly can about the product that I'm using." With the creation of websites like alltrials.net and the proliferation of social media, we're seeing a new era of pharma beginning. Overall, the key takeaway from the conference was that the new pharma should be cooperative, helpful, engaged and transparent, and the rise of new technologies is enabling it.

Stepping out of the dark: Chronic illness and depression
This candid panel moderated by ePatient Sarah Kucharski didn't oversimplify the challenges. ePatient Hugo Campos shared how getting an implantable defibrillator and living with the fear of appropriate and inappropriate shocks left him anxious and depressed. Wanting to avoid sudden cardiac death means living with a device, but as time goes on and had a cardiac event doesn’t occur, you wonder if you really need it and then you’re questioning the presence of it in your body. He explained that even though his healthcare team recommended treatment for his anxiety, he turned it down because it was challenging to see himself as someone who needed this kind of help. It took much longer for Erin Moore, a long-term family caregiver to recognize she was dealing with grief. As she explained, "No one told me grief feels like fear. I realized [as a caregiver] I was in a state of grieving for the life I'd expected." And once she realized what she was dealing with, she found there were no resources. So while identifying and normalizing depression is an essential first step, how do we use technology to provide and connect people with resources?

Self-tracking: The benefits and pitfalls
Self tracking, a process that technology has immensely improved, can help people understand their health. Gary Wolf, founder of Quantified Self, spoke on how people can derive meaning from their own data because they can capture intimate knowledge of a different genre to solve urgent personal questions. But what are the promises and limitations?

Faced with what seemed like a constellation of health issues (apnea, allergies, depression and anemia) Kyra Bobinet, MD, MPH, CEO of engagedIN and consulting faculty, neuroscience and behavior change, Stanford AIM Lab, understood her differential diagnosis, but it didn't quite seem to make sense. She turned to self tracking, and while it helped her identify a milk protein as the cause of her issues, she found an under-appreciation for the negative emotional effects it can cause. For example, tracking and tweeting her weight seemed fine until she gained a couple of pounds and felt discouraged. Accordingly, the design of the technology needs to be more sensitive with a user experience that is empathic to users. How about apps and trackers that apologize?

A panel on "Patients with Chronic Illness: The New Self Tracker?" examined it across a spectrum of illnesses. Parkinson's is a very complex condition so ePatient Sara Riggare tracks her medications, her movement, gait and mood. Similarly, ePatient Doug Kanter used self-tracking to create a detailed picture of diabetes. He found that he hit certain points in his life when he wasn't feeling as well, it gave him insight into what was going on.

But integrating the data from all these different sources is difficult.

By contrast, as someone living with chronic pain, ePatient Britt Johnson found self-tracking to be counterproductive. She explained that when trying to get through the day and distract yourself from pain, the last thing you want are prompts asking you to stop and rate your pain levels. For her, tracking caused internal guilt and self-judgment. In contrast, she found it more helpful to ask what does a successful day look like? Did I get out of the house? Go to the store and cook dinner?

In addition to the patients' difficulty around organizing their data, clinicians also reported on being baffled. They mentioned challenges around how to review and strategically act on the massive amounts of daily data that people track and bring to visits. As the technology exists for self-tracking today whether it is via smart phone applications or wearable technology, we’re still working towards a future where design fully incorporates an emotional component with the user, drives maximum interactions and the data being produced can be easily organized and acted upon in a clinically smart way.

Technology use across socioeconomic lines
Moving from tech savvy patients to "The no smartphone patient", ePatient Dana Lewis moderated a panel looking at the other side of the digital divide. In California, safety net clinics serve 7.6 million, or 3 out of 10 Californians. Only 43% of this population has smartphones, but 91% have text-enabled phones. Considering the numbers, texting and interactive voice technology are the best methods for reaching these groups.

But the bigger issue isn't really about technology so much as understanding the needs of vulnerable populations and feasible communication channels. Outreach needs to be affordable (cheap or free), accommodate low literacy, simple use and available in multiple languages. Underserved populations also traditionally, maintain a level of depression that suppresses activation. How do we use technology to design interventions that help a depressed community that’s just trying to cope with poverty?

And as ePatient Devin Low explained, sometimes using older technology is a choice. He opts to use a flip phone because carrying a smartphone would make him a target for theft in his neighborhood.

Innovators also need to consider the needs of the safety-net clinics themselves when vetting technologies. It can't be solutions that require more time from already overburdened staff and tapping into already strained budgets. Panelist Veenu Aulakh from the Center for Care Innovations explained safety-net clinics serve three out of 10 people in California. She challenged innovators to test their solutions at these clinics, because "if they can work here, they’ll work anywhere."

Data problems: Getting it, accessing it and understanding it
As Charles Ornstein, senior reporter at ProPublica put it: "Can we use data to help people find a good doctor? And while they can report on things like physician prescribing habits, and online ratings, simply giving people this information isn't the answer. You have to help them know what to do with it."

Dr. Vivien Lee of University of Utah Health Sciences also talked about working with clinicians and using technology to publicize patient satisfaction. She explained a process that worked at her organization. Instead of flipping a switch to make the data public overnight, they had a gradual process where data was shared just among the staff. Then, before posting it online for the community, there was a six month lead time with town hall meetings, system changes like free valet parking and time for people to improve based on feedback. By the time they posted the data, most doctors had a good score. After all, most physicians want to learn and strive to be better, so it's more productive to give them feedback they can use and respond to instead of using it as a punitive weapon.

Open source developer Fred Trotter asked, "When will we have more of a Moneyball approach to doctors: looking at them as teams and at their network of referrals?" He also explained that it's actually harder to get information on patients. And it's even harder for patients to donate their own data.

A repeating question was what is the right data that can help hospitals, payers and patients? Daniel Pardi of Dan's Plan described how tracking solitary health habits aren't enough. Instead, a holistic approach is needed. Likewise, Anil Sethi of Gliimpse talked about the importance of "small data" and personal health records that can give more meaningful insight to clinicians and patients.

One the most interesting discussions on new ways of approaching data was presented by Dr. Harold Gardner who talked about HCMS Group's approach to using person-centric instead of disease-centric data to create a Human Capital Risk Index. This approach uses econometric data (instead of cost, which is a lagging index) to identify the 5 percent of patients who will use the most resources. Dr. Gardner showed how the HUI risk index relies on econometric concepts (rather than actuarial or historical records), provides predictive information (rather than lagging data) and centers on the person (rather than disease). He explained that the index is based on comprehensive data including medical, pharmacy and lost time, and relies on more than 300 weighted risk variables.

Going forward from here
Overall, the conference illustrated the industry’s appetite for change and improvement. We're in a unique time of healthcare history where new technologies are producing all of these insights and valuable data before we've fully figured out how to organize and leverage them. Constant discussions and open invitations to all to participate will usher in a new era of healthcare where technology is a facilitator of improved care delivery and healthier, happier populations. Discussions should occur year round, and there are opportunities to do so with organizations like The Society for Participatory Medicine, which is currently welcoming new members for free during the month of September while Stanford MedicineX just launched an online academy for ongoing learning.

Dr. Larry Chu, executive director of Stanford Medicine X, shared a closing thought after being inspired by how the conference continues to mature, "It's amazing to see the technology applications, like e-NABLE's distributed 3D printing project where volunteers work with kids and families to co-design and print prosthetic hands. But this year I think we started to have the sometimes uncomfortable conversations about topics like chronic illness and depression and vulnerable populations — and that's a good thing! It means we have built trust."

Now, let us take that trust and build on it to inspire action and find solutions.

Geri Lynn Baumblatt is the executive director of patient engagement for Emmi Solutions, a company that provides interactive, personalized solutions to improve clinical and financial outcomes for healthcare organizations. Ms. Baumblatt, a health literacy expert, has overseen the creation of multimedia, interactive programs for over a decade that foster patient engagement and shared decision making.

 

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