chronic disease

Archive for chronic disease

What Motivates You, May Not Motivate Me

At Wellpepper our goal is to empower people to be able to follow their care plans and possibly change their behavior, so we think a lot about how to motivate people. Early on when working with Terry Ellis, Director of the Boston University Center for Neurorehabilitation, wanted to make sure that our messages to patients that may struggle with adherence were positive. She works with people who have Parkinson’s disease, and stressed that while they may improve symptoms they would not “get better.”

Last week I had a similar conversation with an endocrinologist about diabetes care plans. People with chronic diseases are often overwhelmed and may take a defeatist attitude to their health. Feedback and tools need to be non-judgmental and encouraging. Ideas like “compliance” and “adherence” may not be the way to look at it. Sometimes the approach should be “something is better than nothing.” And humans, not just algorithms need to decide what “good” is.

Am I good or great?

Here’s an example, non-healthcare related of algorithmic evaluation gone wrong. Rather than applauding me for being in the top tier of energy efficient homes, the City of Seattle, says I’m merely “good.” There’s no context on my “excellent” neighbors, for example are they in a newly built home compared to my 112 year old one, and no suggestions on what I might want to do to become “excellent. (Is it the 30-year old fridge?) I’m left with a feeling of hopelessness, rather than a resolve to try to get rid of that extra 2KW. Also, what does that even mean? Is 2KW a big deal?

Now imagine you’re struggling with a chronic disease. You’ve done your best, but a poorly tuned algorithm says you’re merely good, not excellent. Well, maybe what you’ve done is your excellent. This is why we enable people to set their own goals and track progress against them, and why care plans need to be personalized for each patient. It’s also why we don’t publish stats on overall adherence. Adherence for me might be 3 out of 5 days. For someone else it might be 7 days a week. It might depend on the care plan or the person.

As part of every care plan in Wellpepper, patients can set their own goals. Sometimes clinicians worry about the patient’s ability to do this. These are not functional goals, they represent what’s important to patients, like family time or events, enjoying life, and so on. We did an analysis of thousands of these patient-entered goals, and determined that it’s possible to track progress against these goals, so we rolled out a new feature that enables patients to do this.

Patient progress against patient-defined goal

Success should be defined by the patient, and outcome goals by clinicians. Motivation and measures need to be appropriate to what the patient is being treated for and their abilities. Personalization, customization, and a patient-centered approach can achieve this. To learn more, get in touch.

Posted in: Behavior Change, chronic disease, Healthcare motivation, Healthcare Technology, Healthcare transformation, Outcomes, patient engagement, patient-generated data

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Introducing Sugarpod by Wellpepper, a comprehensive diabetes care plan

We’re both honored and excited to be one of five finalists in the Alexa Diabetes Challenge. We’re honored to be in such great company, and excited about the novel device our team is building. You may wonder how a team of software folks ends up with an entry with a hardware component. We did too, until we thought more about the convergence happening in technology.

We were early fans of the power of voice, and we previewed a prototype of Alexa integration with Wellpepper digital treatment plans for total joint replacement at HIMSS in February 2017. Voice is a great interface for people who are mobility or vision challenged, and the design of Amazon Echo makes it an unobtrusive home device. While a mobile treatment plan is always with you, the Amazon Echo is central in the home. At one point, we thought television would be the next logical screen to support patients with their home treatment plans, but it seems like the Echo Show is going to be more powerful and still quite accessible to a large number of people.

Since our platform supports all types of patient interventions, including diabetes, this challenge was a natural fit for our team, which is made up of Wellpepper staff and Dr Soma Mandal, who joined us this spring for a rotation from the University of Georgia. However, when we brainstormed 20 possible ideas for the challenge (admittedly over beer at Fremont Brewing), the two that rose to the top involved hardware solutions in addition to voice interactions with a treatment plan. And that’s how we found ourselves with Sugarpod by Wellpepper which includes a comprehensive diabetes care plan for someone newly diagnosed, and a novel Alexa-enabled device to check for foot problems, a common complication of diabetes mellitus.

Currently in healthcare, there are some big efforts to connect device data to the EMR. While we think device data is extremely interesting, connecting it directly to the EMR is missing a key component: what’s actually happening with the patient. Having real-time device data without real-time patient experience as well, is only solving one piece of the puzzle. Patients don’t think about the devices to manage their health – whether glucometer, blood pressure monitor, or foot scanner – separately from their entire care plan. In fact, looking at both together, and understanding the interplay between their actions, and the readings from these devices, is key for patient self-management.

And that’s how we found ourselves, a mostly SaaS company, entering a challenge with a device. It’s not the first time we’ve thought about how to better integrate devices with our care plans, but is the first time we’ve gone as far as prototyping one ourselves, which got us wondering which way the market will go. It doesn’t make sense for every device to have their own corresponding app. That app is not integrated with the physician’s instructions or the rest of the patient’s care plan. It may not be feasible for every interactive treatment plan to integrate with every device, so are vertically integrated solutions the future? If you look at the bets that Google and Apple are making in this space, you might say yes. It will be fascinating to see where this Alexa challenge takes Amazon, and us too.

We’ve got a lot of work cut out for us before the final pitch on September 25th in New York. If you’re interested in our progress, subscribe to our Wellpepper newsletter, and we’ll have a few updates. If you’re interested in this overall hardware and software solution for Type 2 diabetes care, either for deploying in your organization or bringing a new device to market, please get in touch.

Read more about the process, the pitch, and how we developed the solution:

Ready When You Are: Voice Interfaces for Patient Engagement

Alexa Voice Challenge for Type 2 Diabetes: Evolving a Solution

 

Posted in: Behavior Change, chronic disease, Healthcare Disruption, Healthcare Technology, Healthcare transformation, M-health, Managing Chronic Disease, patient-generated data

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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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Different System, Same Challenges: Long-Term Care Perspective From Canada

Kristin Helps, our Director of Client Operations, and I had the opportunity to speak about delivering Empathetic Care for Seniors Through Technology at the annual BC Caregiver’s Association Conference in Whistler, BC. The BCCPA is the representative body for long-term care, skilled nursing, homecare and retirement facilities in the province of British Columbia in Canada. These types of facilities are mostly privately run, by both for-profit, and charity organizations, as opposed to acute care which is run by provincial and regional authorities. While this was a BC organization and conference, delegates came from across the country, and ranged from individual home care works, to facility owners, to university professors and researchers.

For the most part we heard similar challenges to those encountered in the health system in the US:

  • Communication between care settings
  • The struggle to deliver patient-centered care
  • Decreasing reimbursement for homecare
  • Enabling staff to operate at the top of their license

At the same time, people expressed a desire to age in place, and the health system wanted to be able to support this. While 80% of Canadians cited wanting to die at home, only 40% actually do.

One of the big differences we noted at this conference was that speakers and participants were calling on the Federal government to step in and fix many of the problems in a way that we don’t often see in the US. Another difference was that participants were looking globally for solutions to challenges, particularly in dementia care.

Looking Globally for Dementia Care

This was our first time at this conference and veterans told us that the previous year was quite focused on analytics, while this year the focus was on dementia care. While not primarily our area of expertise at Wellpepper, we heard about a number of innovative initiatives to improve care, including a novel approach by the government of Japan. Japan decided to characterize dementia as a social problem rather than a medical problem and trained bank tellers and grocery store clerks to recognize the signs of dementia. It was thought that these people were most likely to see problems, for example if someone was unable to understand how to pay bills or buy groceries. Considering that many with early onset dementia are quite successful at hiding changes from their loved ones, this idea is quite interesting. It also puts the responsibility for care back into society rather than relying on medical facilities that often distance the rest of us from the challenges of aging.

Basketball courts at Aegis Living Seattle

Basketball courts at Aegis Living Seattle

The Butterfly Household Model of Care, which was initiated in the UK, but has been implemented in Alberta with some success, is another novel idea. People with dementia often don’t know what day it is or what they had for lunch, but they do have vivid internal experiences, often remembering happier times of their lives. Butterfly Households are designed to stimulate people with dementia with bright colors, and also to stimulate memories with areas designed to invoke feelings of the past, for example an ice cream shop or an area with old photographs. The idea in a Butterfly home is to meet patients where they are, and caregivers report much joy in delivering care and significantly fewer of the violent behaviors often associated with dementia.

While not a designated Butterfly Home, you can see some of these techniques in action at Aegis Living in Capitol Hill, Seattle. Here are a couple of pictures from when I visited last fall. In an outdoor area they have a car and a garden shed designed to stimulate conversation and fond memories, and an old-gym styled basketball court, where you can shoot hoops sitting down.

Invoking memories at Aegis Living Seattle

Invoking memories at Aegis Living Seattle

To find out more about the topics in this post:

Bank Tellers Act Serve as Caregivers in Aging Japan

BC Caregivers Association

Butterfly Household Model of Care

Aegis Living Capitol Hill Seattle

If you’re interested in learning more about our talk on delivering empathy through technology, contact us.

Posted in: Aging, Behavior Change, chronic disease, Healthcare Disruption, Healthcare motivation, Healthcare transformation, Managing Chronic Disease, Seattle, Uncategorized

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Every Patient Has a Story

I have just returned from my first Beryl Institute Patient Experience Conference 2016 (PX2016), and I’m inspired. At Wellpepper, we are focused on empowering the patient to feel ownership and accountability to participate in their healthcare journey. The Beryl Institute and their members are doing the same and it was great to connect with so many like-minded people. The PX2016 conference is just one way they bring together this community.

PX2016 is 6 years young and attended by mostly caregivers, nurses, doctors, regular people who were touched by a personal health experience and now are in the field, and patients. With only 1000 attendees, it’s possible to form relationships. There was lots of hugging, sharing, pictures and overall excitement to be in Dallas. I met several newbies and like me, they were inspired too.

The conference opened up with a real life patient story. Les, a heart attack survivor, told his story of how he was participating in a sculling exercise and went into cardiac arrest in the middle of the water. The following chain of events happened that allowed him to be standing in front of us to tell his story. A retired nurse was on board and jumped into action to do CPR (she was filling in for her friend who couldn’t make it), the bowman had his cell phone to call 911 (typically he doesn’t bring it on the boat), another rower in his own boat happened to be near the dock gate and had a key to unlock the gate (usually locked because it was 5:30AM) which allowed the paramedics to get to Les. If there was one break in that chain, Les would not be with us. He went on to share his experience about his care at UCLA Medical Center and how every touch point from the people on the boat, to paramedics, to the care team made a difference in his recovery. By this time, there was not a dry eye in the place. It was all about why we in this profession of healthcare really do want to make a difference in the patient experience.

This lead to the theme that every patient has a story. From the other keynotes to the sessions I attended, this theme was pervasive. The focus of PX 2016 is to share stories, best practices and ideas on how to bring together interactions, culture and perceptions across the continuum of care.

In the session, Removing Complexity from the Post-Acute Care Patient (one of our passions at Wellpepper), it became clear that the long term care model needs to be reinvented for simplicity. True simplicity comes from matching the patient’s experience with the patient’s expectations. As an example, The New Jewish Home is renaming its post-acute rehabilitation to The Rapid Recovering Center which supports setting a different tone for the patient and ultimately in their experience. When a patient is sent to a post-acute rehabilitation center it can suggest a long and difficult recovery. But, naming it the Rapid Recovery Center aligns with the patient’s expectation of wanting to get better as soon as possible.

Another session that hit close to Wellpepper’s core values was how University of Chicago puts family and patients first in their patient experience strategy. Enhancing Patient Experience and Engagement through Technology Innovation by Sue Murphy, RN, Executive Director- Patient Experience and Engagement Program and Dr. Alison Tothy, Associate CMO – Patient Experience and Engagement Program at University of Chicago suggest the ability to capture real-time opportunities for engaging patients in their care and in their service expectations with innovative technology and techniques can lead to overall happier patients. Such technologies like rounding, discharge call centers and interactive patient care have led to substantial outcome improvements. However, just implementing technology did not solve the patient experience challenge. A culture shift in the staff was required which inspired them focus on individualized care for each patient. Combining a culture shift with innovative technology has allowed the University of Chicago to increase patient satisfaction scores, reduce readmission rates and improve outcomes. Furthermore, leadership is engaged and excited about the power of technology to improve the patient experience.

To bring it to a close, we were inspired by another personal patient story from Kelly Corrigan. She is a New York Times best-selling author who shares her most personal stories, including her health challenges. She has had more than her share of health encounters between herself and her family. She read an excerpt from her book, The Middle Place, where her and her Dad where both diagnosed with cancer in the same year. It was a compassionate and funny rendition of when she just starting her chemotherapy sessions and her Dad came across country for support. She talked about how in the middle of crisis, magnificent can happen. She was amazed to witness how all the people around her, including herself, able to conform into the new reality – cancer. Although a happy ending for her, not so much for her father. He passed away last year. She emphasized how at the end of her father’s journey, she made a point to thank all the caregivers for they really did make a difference in a very difficult time. Then looking out at all of us in the audience at that moment, almost with a tone of authority, she challenged us to hold on to the feelings of why we went into healthcare.

For some of us, it was a personal experience. For others, it was the opportunity to make a difference. Regardless, as Kelly so eloquently put it, people want to feel as if they have been felt and be a good listener because every patient has a story.

Posted in: Behavior Change, chronic disease, Healthcare transformation, Managing Chronic Disease, patient engagement, Patient Satisfaction

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Personal or Population Health? Big Data or Small Data?

Seattle Health Innovator's meetupJune’s Seattle Health Innovator’s Meetup topic was on Innovations in Population Health Management. Interestingly much of the discussion from panelists circled back to the individual patient. It seems that much of this was because the great promise of big data analytics in healthcare and automation and economies of scale through electronic medical records have not been realized. The audience consisted of entrepreneurs building solutions in this area, and innovative and entrepreneurial people within health systems.

The event, at the sleek new Cambia Grove healthcare meeting space, was kicked off by Dr. Wellesley Chapman, Medical Director Innovation and Development at Group Health. Dr Chapman set the stage by defining population health in a highly inspirational manner by referring to The Gates Foundation mission that everyone deserves to live a healthy and productive life. Narrowing in a bit more Dr. Chapman talked about the influences of good health on a population. Interestingly, although population health is largely thought of as a health system problem, the formal medical system only has a 20% influence on the health of a population and a person. Socio-economic factors have a much bigger influence, things like building walkable cities that encourage activity and community, access to healthful foods, and education. Unfortunately with healthcare representing 18% of the US GDP, there is a misallocation of funds to the clean up of problems versus infrastructure that will affect the well-being of the whole population. However, even though care delivery is a small part of the overall picture and influencers of health, Dr. Chapman enthusiastically encouraged the audience to do what they could to affect change.

The meet up continued with a panel discussion moderated by former Group Health VP of Marketing and now patient engagement consultant, Randy Wise and featuring:

When considering a population health strategy, key factors the panel felt were important were lead time to implement, expected outcomes, costs to patient and payer, and the overall patient experience. Patients are concerned about the quality of their lives, and this needs to be addressed at the primary care level, however, most health systems do not have a primary care strategy. Primary care is reactive rather than preventative, and reactive care is not usually focused on patient goals. Since the health of a population is so varied, at the primary care level, panelist thought “everything could be considered population health” making it difficult to pinpoint specific solutions for care.

When asked about whether big data was improving population health, panelists were negative to neutral, citing Excel spreadsheets used to review data, and the opportunity to know a lot more about patients. However this again came back to the specific saying that the intervention is all about the relationship between patient and provider and asking whether we are enabling patients to follow through with recommendations. (At Wellpepper, we would say there’s a great opportunity to improve here based on many of the care plans and instructions we’ve seen.)

Seattle Health Innovator's MeetupDr. Levine from Iora talked about his experiences training residents in listening skills and the payoff. Compared to a common approach of telling the patient they have limited time and to focus on the top issue, Dr. Levine advocated listening first, ask the patient to recount all their concerns, make a commitment to truly listen and hold the information the patient provided, and then follow up on the most pressing issues. Although the residents were skeptical, this approach yielded significantly faster follow-up as key information wasn’t being uncovered at a later date.

Events like this provide a great opportunity for those enthusiastic about changing healthcare to exchange ideas, and especially for entrepreneurs to learn practical advice from those in the trenches delivering care and trying new models. The big takeaways are that the promise of big data in healthcare is yet to be realized, and because of that population health tools may not be as effective as they could be. While the focus on patient personalization, customization, and meeting the needs of the individual are key, we need to figure out new ways to scale to solve this great problems in health.

Posted in: Behavior Change, chronic disease, Healthcare Disruption, Healthcare motivation, Healthcare Research, Healthcare Technology, Healthcare transformation, M-health, Seattle

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Developing Exercise Self-Efficacy for Chronic Disease Patients

APTA CSM 2015 Recap: Use of Mobile Health Technology to Facilitate Long-Term Engagement in Exercise in Persons with Chronic Neurological Conditions

Speaker: Robert Motl, PhD

Managing chronic neurological diseases like Multiple Sclerosis and Parkinson’s is not easy, and made even more difficult by conflicting research on how to treat issues. For many years it was unclear whether exercise was good or bad for people with Multiple Sclerosis: some thought that exercise increased the inflammation that is a hallmark of the disease. Recent studies have shown the opposite however and this talk was focused on how an Internet-based intervention could improve exercise self-efficacy.

Exercise, in addition to providing increased mobility, has been shown to actually decrease depression and fatigue for these patients, contradicting past beliefs. Unfortunately, many physicians don’t discuss exercise with these patients, and to go from a sedentary lifestyle to one that includes activity, especially for someone with a chronic neurological issue requires support and supervision.

The problem is widespread as only an estimated 20% of MS patients in the US are engaging in levels of physical activity that will have a positive impact, and studies show a linear decrease in activity from initial diagnosis over the course of the disease with a systematic decline in physical activity every 6 months.

Bandura's Social Cognitive Theory, Source Ahmed Asim

Bandura’s Social Cognitive Theory, Source Ahmed Asim

When researcher Robert Motl discovered through a Microsoft-sponsored survey that people with MS were more likely than average to have Internet access (96% had access actually) he decided this would be a great way to educate on the benefits of exercise and attempt to encourage self-sufficiency. He designed an Internet-portal and telemedicine based intervention using Bandura’s techniques of social cognitive theory to effect behavior change.

People learn by observing and by doing and confidence is key for self-efficacy. To accomplish this through an online intervention the website featured personal stories and videos from people who had MS talking about how exercise made a difference for them. People need role models for behavior change and it’s important that those models are similar. The impact of these videos was that people were able to think “If they can do it, so can I.”

Patients were also able to set goals and self-monitor them and communicate in chat rooms with other people with similar situations. After the first year, the website was removed, which may seem strange, but it was done to test whether people would continue with the intervention, which they did. At this point the only support they received 1:1 video chat with a physical therapist to help them check-in and maintain goals.

The main takeaways from this session are that with the right tools and support, which do not have to be expensive, people can change a behavior and maintain self-efficacy. At Wellpepper, we have definitely seen this and hope that more studies like this enable better care through technology and through outside the clinic support.

Note that the other half of this talk explored a yet unpublished study that Boston University is doing with Wellpepper. You can get a sneak preview here, and we’ll be publishing more on this in the future.

Posted in: Adherence, Behavior Change, chronic disease, Healthcare motivation, Outcomes

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