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Sidelined by mindlines?

Evidence-based medicine (EBM), a movement that emerged roughly 30 years ago, advocates for the use of current best evidence from high quality research studies in healthcare decision making. This logical and straightforward way of delivering healthcare often fails in modern day practice. One simple reason that clinicians cannot execute point of care decision making with EBM is due to the overwhelming volume of scientific evidence that is ever changing and available within severe time constraints. A more pervasive reason is found in the way clinicians practice and incorporate knowledge into their daily work – they tend to follow what ethnographers Gabbay and Le May have coined as mindlines: collectively reinforced, iterative, internalized, and tacit guidelines. Clinicians’ practice is primarily influenced by trusted colleagues, mediated by cultural and organizational features of their practices, and is constantly refined as knowledge-in-practice-in-context.

Through my own wandering through various clinical settings, I have often heard phrases from respected clinicians including “there is evidence…and then there is actual practice.” The five part concept of EBM appears intuitively important in a science-based profession – define the problem, search for sources of information, critically evaluate that information, apply the information to the patient encounter, and evaluate the efficacy of the application of that information for that specific patient. It seems that an exciting opportunity would be data analytics enhanced by artificial intelligence that could search high volume clinical research and identify patient-matching criteria in order to assist clinician judgment on relevant treatment protocols.

How much of this is naïve rationalism? Upon evaluating a typical clinical scenario, what I used to think was a clear set of facts in a one-dimensional reality is now more like an interaction of temporary realities of patients, clinicians, researchers, and guideline/policy makers. Mindlines are therefore:

  • More than intuition.
    Mindlines that clinicians abide by undergo a validation process despite being mainly tacit. They are built off of shared sense-making in the local settings of patient care, which leads to coherence and negotiation with real-time environmental influences. They provide for more accuracy than the reductionist tools and beliefs of EBM.
  • More patient centered.
    Mindlines allow for incorporation of valid knowledge to occur from the patient’s perspective, as opposed to the paternalistic model of clinician knowing all and only being able to derive more information from EBM.
  • Meaningful and effective.
    Mindlines are not very far off from the way typical high performers solve problems – they consciously and unconsciously adjust their frameworks through contextual experience, colleagues, and the physical world. EBM can negotiate with these frameworks, but likely can never replace them.

The paradigm of mindlines offers insight into the way clinicians practice and how western medicine operationally works in an environment with varying expectations from the patient and the overall industry where innovative work is being attempted. The secular trend for the future hopefully will be the risk-adjusted incorporation of EBM with assistance from artificial intelligence into the tacit world of clinical medicine.

Posted in: big data, Clinical Research, Research

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Falls Challenge

How might we enable older adults to live their best possible life by preventing falls? We have entered a challenge with AARP and IDEO to bring our proven falls solutions to the masses. Along side our partners at Harvard and Boston University, we believe that using mobile technology to enhance and scale a proven falls prevention program will lead to better life by increasing access to care and decreasing costs.

The challenge started with over 220 submissions and recently weeded down to the top 40. We’re thrilled to have made the first cut. Our method is proven and we invite you to participate in the next round to refine our idea and help achieve greater impact.

Click here to check out our entry!

 

 

Posted in: Aging, Clinical Research, Healthcare Technology, Outcomes, Physical Therapy, Research, Uncategorized

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Better Living Through Big Data

This week I had the opportunity to participate on a lively panel at General Assembly Seattle organized by Seattle Health Innovators, and moderated by Corinne Stroum of Caradigm. Fellow panelists included Randy Wise formerly of Group Health and now at EveryMove, Ang Sun of Regence/Cambia, Lifesprite founder Swatee Surve, and Daniel Newton of Accolade.

Corrine sent us a series of great questions in advance, and we had a rich discussion and so many questions from the audience that we didn’t even get to half of them. It’s a big topic, and with payers, providers, and technologists on the panel there was a lot of opportunity for broad perspectives. There’s a discussion of having a follow-up to this panel to continue the conversation—stay tuned for more on that. The general themes of the discussion included the value of big data to influence individual health with examples like the quantified-self movement, but more generally how our ability to collect and analyze can lead to more personalized and better healthcare. img_3265

At Wellpepper, we have a lot of data to analyze. As Wellpepper CTO Mike Van Snellenberg pointed out in his Stanford MedX talk and I’ve also talked about in this paper in The Journal of MHealth, having data provides an opportunity to get answers faster than using the traditional scientific method. Rather than formulating a hypothesis, setting up an experiment, collecting data, analyzing the data, and then going back to the drawing board if your hypothesis is not born out, data enables you to ask a series of questions and get immediate and sometimes surprising answers.

The panel kicked off with the sharing of some surprising things that we’ve found from the data,  ranging from which mental health tools were favored by different populations to the ability to predict hospital readmissions. In addition to finding trends from explicit patient input, we also discussed the ability to draw insight from activities including social media and mobile usage patterns. Swatee mentioned the Instagram analysis that showed color scheme on photos was a predictor of depression.

The ability to combine both passive and active patient-generated data, and draw conclusions from broad date sets these data sources can help to deliver better care – resulting in what Daniel Newton referred to as “small data.” That is, I’m going to learn as much as I can about you, and then tailor care to you, which is the approach Accolade takes.

As with any talk on tracking and data, questions of privacy came up. While all the panelists thought that there have become standard terms for people to opt-in to sharing health data, describing the use of that data was deemed important. At this point, Ang Sun from Cambia (who admitted that, as a healthcare plan, they had a heck of a lot of data on people), mused that he wished his physician knew as much about him as Google did. Generally, there was consensus that, if the purpose of the data sharing was for connecting people with the appropriate healthcare services, people would opt in.

Our panel was pretty aligned on the idea that there is big value in big data for healthcare, but that the general applications and usage are still in early days. First, there are the privacy concerns and even laws. Second, current healthcare organizations using this first generation of EMRs have limited ability to look at aggregate data for trends. However, with new technology and personalized approaches to care, we see great promise in big data and predictive analytics for healthcare.

Posted in: Clinical Research, Healthcare Research, Research, Seattle

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MHealth and Big Data Are Catalysts for Personalized Patient Care

Although there are many complexities wrapped around our healthcare system, Stanford University’s 2016 Medicine X Conference starts finding solutions to improving patient care by focusing on increasing patient engagement and transforming how patients are treated in the system.

Wellpepper CTO Mike Van Snellenberg, who spoke at MedX in September with digital health entrepreneur and physician Dr. Ravi Komatireddy, addressed several important aspects of big data collection.

“Collecting big data is like planting trees. You need to plant the seed of the process or tooling,” says Van Snelleberg. “Over time, this matures and produces data.”

Mr. Van Snellenberg, who has collected and analyzed patient data at Wellpepper, discovered several key aspects of data collection that could improve care continuity for both patient and providers. He shared this to his MedX audience.

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“Wellpepper has already uncovered new understandings about which patients are most adherent as well as indicators of readmissions,” says Van Snellenberg. “That’s very valuable information.”

“We’ve discovered that, as you collect patient-generated data, these types of insights as well indications about the effectiveness of certain clinical protocols will be available to you. This will help allow for providers to encourage positive patient behavior,” he stated.

Mr. Van Snellenberg spoke further at an interview in October about collecting and using patient-generated data.

 

Question: What groups can benefit off the collecting of big data?

Snellenberg: Collecting patient-generated data can ultimately produce better outcomes and patient care for hospital and clinics as well as the patients themselves. The more in quantity and detail, the better it is to help produce good results. Data collection has tremendous value that can allow hospitals and clinics to learn more about their patients in between hospital visits, thereby filling in missing gaps in patient information. We also realized that collecting big data can potentially prevent complications or readmissions by identifying warning flags before the patient needs to return to the clinic.

And as mentioned, analyzing big data has provided us insights about which patients are most adherent. For example, we have found that patients with 5-7 tasks are adherent while patients with 8-10 tasks are not.

 

Q: What are some things you have discovered using patient-generated data?

MS: We were able to make observations on the patterns. We also discovered a strong linear correlation between the level of pain and difficulty of patients.

Traditionally, patient data remained in the hospital. This often left big gaps in knowledge about the patient in between hospital visits. By collecting and data in between visits to the hospital, you can discover important correlations that would not have been discoverable without data.

 

Q: What are some possible methods to collect patient data?

MS: Dr. Ravi Komatireddy, who worked in digital health, suggested several programs such as Storyvine and AugMedix.

Usually, data is collected by patients recording symptoms and experiences on a daily basis in a consistent manner and then managed afterwards. For example, patients themselves tend to keep track of their progress in diaries or using the FitBit to record the number of steps and heart rate.

 

Q: What are some of the most unique aspects about this year’s MedX?

MS: One unique aspect about the MedX Conference is that it provided more opportunities for diverse voices to be heard in addition to health professionals – including a mix of health patients, providers, and educators.

The mindset was also encouraged to change. Some of the convention’s most progressive talks on stage happened when phrases such as “How might we…” and “Everybody included” are brought up in the discussion.

The term “Everyone included” came up most often, pushing for more perspectives outside of JUST the physicians. MedX’s solution-oriented focus proves to be heading down a successful route to improving patient care in the healthcare system as well as acting as the initiative to open doors for new voices to be heard.

Posted in: Clinical Research, Healthcare motivation, Healthcare Research, Healthcare Technology, Outcomes, patient engagement, Research, Seattle

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Finding Change and Honesty at Mayo Transform Conference 2016

mayo-clinic-logoAlthough the theme of this year’s Mayo Transform conference was “Change,” it might as well have been dubbed “Honesty.”

From keynotes to breakout sessions, there was a raw sense of honesty and acceptance of the fact that change is hard, and we’ve reached a point where the evolution in healthcare doesn’t seem to be happening fast enough.

When you’re as successful as Mayo, it might be easy to brush failure under the rug – which made this session, “We Made This Thing, But It Didn’t Go as Planned. Now What?” unique. Now that some of the initial hype for digital health has died down, we are in a phase of realistic optimism where sharing both wins and misses represents a realistic way forward.

This interactive session in three parts by Steve Ommen, MD, Kelli Walvatne, and Amy Wicks unfolded a bit like a mystery. Questions were posed to the audience at each phase for our input on what might have gone right and wrong. Not surprisingly, the attentive audience proved as capable as the presenters, and some of the most valuable insights came from the audience questions.

The case study in this session was a three-year process to develop a new interface and workflow for the cardiology clinic. Dr. Ommen and the other presenters did not tip their hands to whether the project was successful or not, and we had to tease out the wins and losses that occurred during each phase.

The presenters shared stories, but did not show any artifacts of the process such as flow diagrams, screenshots, or personas. This methodology was effective because, instead of getting bogged down in critique of particular elements, we were able to see the bigger picture of challenges that could apply to any innovation or clinical change.

At the end of the session, the presenters summarized their top takeaways as:

  • Not having enough credibility and evidence

Much of the Transformation team were experts in design, but not necessarily the clinical experience for this service line. There were some misunderstandings between what could work in theory and in practice, although the team did identify areas of workflow improvement that saved time regardless of whether the technology was implemented.

  • Change fatigue (or “Agile shouldn’t be rigid”)

The team tried to use a lean or agile methodology with two-week product sprints: iterating on the design and introducing new features as well as interface changes biweekly. This pace was more than what the clinical users – especially the physicians – could handle, but the design aimed to stay true to the agile process. In this situation, the process was not flexible to the needs of the end users and possibly exacerbated the first point of lack of credibility.

  • Cultural resistance

The team lost champions because of the process. It also seemed like they may have spent too much effort convincing skeptics rather than listening to their champions. One physician in the audience wondered aloud whether the way physicians were included in the process had an outsized impact on the feedback the team received about what was working and wasn’t working. From his own experience, he noticed that a physician’s authority is often a barrier to collaboration and brainstorming.

From audience observations, it seemed like there may have been some other challenges such as:

  • Scope/Success Definition

There wasn’t a clear definition of success for the project. While the problem was identified that the current process was clunky and the technology was not adaptive and usable, not all parties had a clear understanding of what constituted success for the project.

Looking back, Dr. Ommen suggested that rather than trying to build a solution that addressed all co-morbidities, they should have chosen one that worked for the most common or “happy path” scenario. The too-broad scope and lack of alignment on goals made it challenging to conclude success.

  • Getting EPIC’ed

When the project started, the team was largely solving for usability problems created by having two instances of Cerner and one of GE used in the clinical workflow. During the course of this three-year project, Mayo made the decision to ink a deal with Epic, rendering the current problem they were solving for obsolete.

Going for a smaller win early on might have delivered value to end users before this massive shift in the underlying medical records software.

So what happened?

You can probably tell from the recap that the project was shelved. However, the team did have some wins, certainly in their understanding of how to better run a project like this in the future as well as in helping the clinical team optimize their workflow.

What should you take away?

Know your users, iterate, and move quickly to deploy quick wins – but not so quickly as to alienate your stakeholders.

Finally, ask your peers: we’re facing similar problems and can learn together.

Posted in: Clinical Research, Healthcare motivation, Healthcare Research, Healthcare transformation, Outcomes, Research, Uncategorized

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Patients As Designers Of Their Own Health

Seattle’s grassroots healthcare community continues to gain traction with a new meetup for patient-centered design. Last week’s meeting was generously sponsored by MCG a subsidiary of Hearst Publications who are quite active in the healthcare world with content and education. The panel discussion featured Dana Lewis, a patient-maker who is active in the open source movement for diabetes care and built her own artificial pancreas, Christina Berry-White from the digital health group at Seattle Children’s, and Amy London, Innovation Specialist at Virginia Mason. The group talked about how to effectively get feedback from patients, and how patient hackers like Dana can take poor design into their own hands build tools they need, and ultimately influence large healthcare companies, in this case device manufacturers.

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Dana, Christina, and Amy, photo credit Alina Serebryany

The panel had great advice for understanding and developing products and improving processes for patients, as well as for soliciting feedback from patients. Here are a few of my takeaways.

Tips for developing products and process

  • Understand patient’s goals and desires. Often the goals of the hospital or health system are not the same as the patient’s. After meeting with a group of patient advocates one Virginia Mason surgeon realized that the only outcome that really mattered was whether the patient had a positive experience.
  • Let patients customize their views and experiences. Amy talked about a particular chart where she wanted to see the graph rising to show increasing blood sugar and another user she talked to wanted to see the graph lowering to show insulin lowering and a need for intervention. Amy was confused by this view but created her open source artificial pancreas interface to enables people to choose their own view, and the result was that people who had diabetes looked at it the same way Amy did and parent-caregivers of diabetic children wanted the second view. Which brings us to the next point–
  • Differentiate between users. Patients often have different requirements than their caregivers, whether that’s parents caring for a child or teen, or adult children caring for a parent. As well, the clinical workflow shouldn’t dictate the patient experience.
  • Get feedback early. Amy mentioned meeting with a device manufacturer who showed her an almost ready for release glucometer that was intended to fit in the pocket. She quipped “you obviously didn’t test this with women’s pockets.”

Tips for collecting feedback

  • Build it into the product. Christina from Children’s mentioned that when they switched from reams of paper to an iPad-based tool for patient on-boarding forms the physicians wanted to stop using it because it did not immediately integrate with the EMR. Luckily the tool had a feature to survey users on whether they preferred using it to paper, and the answer from parents was overwhelmingly yes. The digital health team showed these results to the physicians, and the tool stayed in place.
  • Be creative when soliciting feedback. Children’s knew from experience that parents and patients were reluctant to give them negative feedback after a lifesaving experience like an organ transplant, so they used techniques that are often used in brand market research: analogies. For example, they asked teens to describe a digital tool as a car, and found out that their tool was like a pick-up truck to them: useful but utilitarian.
  • Use patients to collect feedback. Patients are also often intimidated to provide direct feedback to healthcare professionals as they see them as authority figures. At Virginia Mason patients who have already had a successful joint replacement visit post-surgical patients to find out how they are doing, and talk about their own experiences. Patients are a lot more candid with each other, and Virginia Mason was able to benefit from understanding the questions they asked the peer ambassadors and incorporate that information into formal programs.
  • Ask the questions at the right time. If you want to understand post-operative experiences ask within a few weeks of the actual experience, not 6 months later.
  • Be aware of selection bias. Patients who volunteer for focus groups are often those who have the time and money to be able to do so. Your feedback may be skewed towards retired patients, and those who are not hourly workers. Consider how you will cast a wide net.

Lots of great advice at this event, much of which we already incorporate into our processes and products at Wellpepper, although I definitely got some new ideas and it’s great to see the community coming together to share best practices. My only disappointment with the event was that with a title of Patients as Designers, I expected to see more patients on the panel. While there was a last minute cancellation of a patient-maker, it would have been amazing to have Children’s and Virginia Mason bring one of their patient-designers to be on the panel. Maybe next time?

Posted in: Healthcare Disruption, Healthcare Research, Healthcare Technology, Healthcare transformation, Lean Healthcare, Research, Seattle

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LAM Conference – A patient’s perspective

Dr. George Pappas, LAM Regional Clinic Director

Last weekend, my husband and I attended the Regional TSC and LAM Conference at Swedish Medical Center in Seattle, WA. This conference covered current research developments, treatment options, and patient education. I attended because I wanted my husband to learn more about Lymphangioleiomyomatosis (LAM), because I am a patient. The LAM Foundation defines LAM as “a rare lung disease that usually strikes women during the prime of their lives… this disease is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system, and kidneys.” LAM occurs almost exclusively in women, and it is usually misdiagnosed for years, often as asthma, emphysema, and/or bronchitis. LAM is considered a progressive disease, which can lead to lung transplantation 10 years post diagnosis or for some, like me, it progresses slower. Treatment with a mTOR inhibitor, Rapamune, may improve lung function, which was all the buzz at this conference, but unfortunately there is no cure.

This conference was coordinated by the patient advocacy networks, The LAM Foundation and TS Alliance, and was designed to provide patients with the opportunity to interact with the LAM scientific community, physicians, and patients. I have to be honest, I was surprised to see a packed room because there are only 3-5 LAM patients per million women in the world. I later learned that newly diagnosed patients traveled from as far as Alaska with their loved ones for the same reasons as I: to learn more about clinical drug trials, to ask questions, and meet other ‘Lammies’. This mutual interest was palpable during the presentation by Dr. Ray Yeung, a surgeon and renowned LAM expert. Hands were flying up with questions. Dr. Yeung spoke about the pros and cons of clinical trials, and the pathogenesis of Angiomyolipomas (AML) and LAM. Dr. Yueng had a great amount of positive energy for what he has learned about LAM through his research and it was awesome to hear from a scientist about the importance of patients getting involved in clinical trials.

After the session with Dr. Yeung, we had lunch and I got to talk to a very lovely woman that worked as a Patient Relations Advocate for Lundbeck, a pharmaceutical company that sponsored the conference. Her role was to bring the face of the company to the patient advocacy foundations and their patients, and in return be the voice of patients in order to always keep us in the forefront of the company’s mission. I was particularly impressed with this, especially coming from the pharmaceutical industry, which tends to get a bad rap as being money centric. I continue to be awestruck with her grace, attitude, and lovely disposition, and how she didn’t once talk about her company, but wanted to know more about ME, not my disease. I really hope that our talk (and the fact that I thanked her repetitively) and the other conversations she had with patients that gathered around us, made her journey worth it.

On the drive home, she really got me thinking about how important her role is, and how the information she gathered will be priceless to both Lundbeck and to the LAM community; what she learned cannot be found in any search engine or book. I believe there is a huge disconnect between patients and some of the key players in making us… well, not patients anymore. The folks that advocate for us are so important because not only do they form an overarching understanding of disease, research treatments, help us keep symptoms under control, argue with the insurance companies, help us manage setbacks, etc., they also help us realize there is meaning to getting up in the morning and living life knowing we are not alone. It’s like having a big mama bear always looking out for you, so you can focus on you and not your disease.

Upcoming events…
The International Rare Diseases Research Conference & LAMposium, Cincinnati, OH, Sept 22-25, 2016
LAM Regional Conference, Cleveland Clinic, November 5, 2016.

Posted in: chronic disease, Clinical Research, Managing Chronic Disease, Patient Advocacy, patient engagement, Rare disease, Research, Seattle

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Patient Engagement in Surgical Outcomes Research Webinar

Hosted by Surgical Outcomes Club
Featuring speaker Danielle Lavalle, PharmD, PhD
03.17.16

I attended this webinar yesterday to learn about patient engagement in research development because of a simple reason: here at Wellpepper patient engagement is very important to us and I love research. I think of research as a tree, a question starts in the trunk and branches out to all these different observations while the leaves take in nutrients so the tree can thrive. Patients are a lot like leaves; they provide nutrients for the research to grow and in some cases without them there would simply be no tree. As with the example of the Comparative Effectiveness Research Translation Network, CERTAIN, they have found ways for patients to provide that vital ‘nutrient’ directly via a Patient Advisory Network. The Patient Advisory Network is made up of caregivers and patients that partner with researchers to provide their perspective in order to improve current research. This is a wonderful collaborative way for a patient to have a voice for many and as Dr. Lavalle said “…patients bring in an insider’s perspective that clinicians and researchers may not think about.”

The role that patients have through the Patient Advisory Network is indispensable; they provide an insiders perspective, articulate the most pressing questions and concerns, and help researchers think through what information should be relayed and how. For example, using language that is understandable by patients themselves, not just clinicians! Patients can partner with CERTAIN through advisory group membership, as a research partner, as a research and materials reviewer, or as a patient representative. One way CERTAIN reaches patients is via their blog; take a look and see if you can help!

-From Dr. Lavalle’s slides/webinar

In this webinar, Dr. Lavalle talks about the development over the last year of the CERTAIN project, Comparison of Outcomes of Drugs and Appendectomy (CODA) Trial for Appendicitis. The study poses the question: is there a new way we should be approaching the treatment of acute appendicitis – Appendectomy or ‘Antibiotics First’ strategy? “No studies to date have compared the impact of these two treatments for appendicitis on the overall patient experience or included standard PROs in addition to clinical outcomes.” With this factor ascertained, the importance of incorporating the patients voice in the very beginning was important to CODA. Therefore, CODA posed the following question to the CERTAIN Patient Advisory Network: If you landed in the ER with Appendicitis would you would you randomize between appendectomy or antibiotics? The attached graphic sums up the results of such findings. Dr. Lavalle was surprised that so many people would randomize, me too actually!

Patient engagement provides a dynamic aspect to research, that comes to all of us as no surprise, but CERTAIN has done a wonderful job of creating a great community that brings together both patients and research experts that in return makes research outcomes that much more beneficial. I am very curious what the patient centered outcomes will be for the treatment of appendicitis with either surgery or antibiotics. I guess we will all find out when the CODA project concludes in 2020.

Thank you for the wonderful talk Dr. Lavalle!

Next Surgical Outcomes Club Didactic Session: Thursday April 21, 2016 at 2 pm (ET)

Posted in: patient engagement, Patient Satisfaction, Research, Seattle

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