Patient Advocacy

Archive for Patient Advocacy

The Disneyfication or Consumerization of Healthcare

I had the privilege of participating in my second panel hosted by Curtis Kopf, Senior VP of Customer Experience at Premera, at the recent Washington State of Reform Health Policy Conference. Curtis was formerly of Alaska Airlines and is new enough to healthcare to be able to point out idiosyncrasies of healthcare, and he led the audience, my fellow panelists, Elizabeth Fleming, VP of Group Health Cooperative, Tabitha Dunn, VP of Customer Experience at Concur, and me on a rollicking discussion of who excels in customer service, how to emulate consumer organizations, and how not to emulate consumer organizations.

I enjoy panels as they afford the opportunity to evaluate my own perspective based on the insights of others usually in extremely different roles. This panel was unique as we represented payer, provider, employer, and digital health/technology: practically a cross-section of the industry.

Both over coffee prior to the panel and on the panel, we talked a lot about the influence and guiding principles of Disney as the quintessential consumer experience focused organization. Tabitha had just returned from a holiday trip with her family, and Curtis had the opportunity to attend the Disney Institute for customer service training during his time at Alaska airlines.

Before getting into the takeaways from our experiences and thinking about what to take away from Disney, we started the panel by discussing why consumerization was a topic in healthcare at all.

A number of factors have converged to drive consumer or patient-centric approach we now see in healthcare:

  • 20M newly insured people offered an opportunity that brought new players, like Walgreens, Walmart, Medical One, and Zoom+ into primary and urgent care market
  • On demand services like Uber and constant communication through messaging apps, and the ubiquity of smart phones created an expectation of healthcare on demand.
  • High-deductibles made consumers evaluate more closely how they were spending their healthcare dollars
  • Getting over the hump of initial EMR integration made physicians ask why they couldn’t have consumer-quality tools to do their jobs

Regardless of what happens with the ACA with the incoming administration, we don’t expect many of these things to change, although there may be more competition in primary care as these new players put pressure on incumbents.

How do you react when there is more competition? A customer-centric approach is a good place to start, which brings us back to Disney. As a child, I did a school project on Walt and his empire, but have to admit I didn’t know as much about them as my fellow panelists.

Here are my key takeaways from the discussion:

  • Disney is extremely consistent, which provides autonomy for their staff to make good decisions within the 4 values that Disney holds. Although you may think that the brand is the highest value, it is actually safety. A Disney cast member is allowed to break character only when safety is at risk. Consider this as you think about the healthcare experience: safety and good experience are not mutually exclusive.
  • If you’re going to try to emulate an experience from another industry, make sure you fully understand that company’s or industries core values. The that resulted when executives managed to the HCHAPS survey: Nurses were given scripts to follow rather than making decisions, which is the exact opposite of how Disney actually operates. Nurses should have been given autonomy to work within the values of the health system and the needs of the patient.
  • Disney has an entire underground operations center that supports what guests experience above ground. This supports both the safety but also the experience of the park. Curtis toured this facility while at the Disney Institute. What struck me the most about this was the realization that the hospital has no back-office. We’ve met with administrators in their offices that are converted hospital rooms. First, think how uninspiring this is for employees as an office. Second, these are usually on active hospital floors, so patients experience random water cooler conversation as they are in care.

As an outsider to healthcare, it took me a while to get used to going to the hospital to have meetings, and it still makes me uncomfortable to pass patients waiting in hospital beds in the hallway while I’m going to negotiate a contract. This lack of a “back-office” impacts patients and staff alike, and really extends to every patient interaction. The EMR is essentially back-office software. Why hospitals run their patient-facing experience from this essentially line of business technology is beyond me.

Although at Wellpepper our client is the health system, our most important user is the patient. We want to ensure that the patient experience is as good or better than any popular-patient facing applications, and represents how the patient understands their care. As a result, we are able to enable patients to participate, and self-manage, and still deliver valuable information to help the internal health system operations center be more effective, which is why I’m always happy to talk about the consumer experience in healthcare.

 

Posted in: Behavior Change, Patient Advocacy, Patient Satisfaction, Seattle

Leave a Comment (0) →

What Keeps Healthcare CEOs Up At Night?

This week I had a double whammy of healthcare value from the comfort of my desk when MATTER Chicago live-streamed their event “What Keeps Healthcare CEOs Up At Night.” In addition to participating online with 40 others and engaging on Twitter on the topic, I’m pretty sure that Accenture charges big bucks to healthcare organizations to present these findings from interviews with over 50 healthcare CEOs. I got great info, some online networking, and no traffic!

So what does keep healthcare CEOs up at night? It seems that there are differing levels of awareness regarding the health of one’s own organization, changes in population health, as well as changes in healthcare in general. Perhaps the only thing keeping them all up at night is the delicate balance in shifting to outcome and value based payments without disrupting today’s revenue streams. It’s a classic innovator’s dilemma, but nonetheless, interviews and research with over 50 healthcare CEOs have shown that only some are effectively straddling these two worlds. Michael Main, managing director at Accenture Strategy, walked the full-house crowd at Matter and 40 of us on the live stream through the research, looking at winners and losers as well as making a few predictions for how the change would happen.

According to presenter Michael Main and the Accenture team’s analysis, only 5 out of these 50 CEOs were actually successfully making the shift to value based care, and of the rest, only 15 were capable of making that shift.

screen-shot

See full report on Accenture here

To make the shift, Main identified some key criteria:

  • The CEO must have a strong passion for what healthcare can be, not what it is today. He or she must have vision and be motivated to make his or her system the #1 or #2 in their area.
  • The shift from volume to value needs to also include a shift back to volume but with the volume being serving a larger population base, not doing more to each patient. The only way to do this is to really understand a health system’s catchment area and the population. Main used the example of the 1,500 data points that Experian, the credit check company, has on each person and compared that to how few data points health systems have.
  • Care must move from being physician-centered to patient centered, but there must be strong physician leaders on board.

Main also identified barriers to change today:

  • Perverse incentives that reward for doing more to a patient rather than what’s actually best for the patient. Here, Main provided a couple of personal examples, including his father who was admitted to the hospital for 48 hours because of protocol when he would have been better at home waiting for test results.
  • People being worried about their own jobs. Main mentioned working with a nurse’s union on a patient-centered medical home project. Everything was positive until they realized the model would require fewer nurses than first expected. Demonstrating the basic adage that you can’t get someone to believe in something if their own livelihood depends on them not believing it.
  • Too much gray hair in the C-suite. Main believes that many hospital CEOs are too close to retirement to want to tackle the risk. They are looking to ride out the current fee for service world, and hand over the reins when the real change needs to be implemented. Most CEOs estimated the change will take another 7-10 years so they had time to wrap up their retirement packages. (Shades of physicians retiring around the deadlines for implementing electronic medical records.)

As you can imagine, there will be winners and losers in this new world of capitated and value-based payments. Basically, aside from the 20 CEOs that Main identified as either already changing or capable of it, the rest he felt were in the loser category. As care is pushed to the lowest cost delivery, hospitals could lose out if they don’t build integrated networks with primary care and urgent care in addition to emergency and inpatient. Smart CEOs are looking at consolidation by buying the best systems or smaller organizations instead of looking for bargains. They know that those bargain competitors will end up out of business. Winners will figure out how to incubate models that will cannibalize their own business rather that fending off upstarts who are looking to do it to them.

screen-shot1

Winners will have the right leaders who can take a patient-centered approach: both in aggregate and for individuals. In aggregate, they will better understand the patient base they serve in their geography and they will look at treatments that are outcome-driven and patient centered as well as looking at treatments that will impact each individual rather than the standard protocols like what Main described with his father’s treatment.

The Accenture research definitely pointed to answers in the transformation. Unfortunately, it seems like a number of CEOs today aren’t even asking the right questions. And of course, as with every healthcare event for the next while, with the looming threat to repeal the ACA, there are even more questions we need to be asking.

Posted in: Healthcare motivation, Healthcare transformation, Patient Advocacy

Leave a Comment (0) →

Health Care Innovators’ Uphill Climb

The Healthcare Innovators Collaborative and Cambia Grove have joined forces to present a series of talks on our evolving healthcare challenges.

img_0087

This series was run out of University of Washington last year, and this year’s sessions, subtitled “Under the Boughs” are held at Cambia Grove – where a new Sasquatch In Residence (SIR) ensures that the patient voice is present in the conversations.

September’s session took off with Dr. Carlos A. Pellegrini, Chief Medical Officer of UW Medicine, discussing the shift to value-based care. Pellegrini defined UW’s transformation as a process with 6 key goals:

  1.  Standardization

Standardization improves efficiency and is key to reducing cost and improving outcomes. Today, surgeons performing surgery at different hospitals may have varying tasks per hospital. Patients may receive different instructions depending on which physician or department they interact with. As a result, it is difficult to compare outcomes or optimize clinical workflow without a form of standardization.

      2. Population Health Management

Using system data to anticipate patient needs before they become major problems can both improve care and lower costs.

       3. Medical Home 

Implementing the medical home model can allow providers to be more aware of all of their patients and manage them proactively in measurable groups.

       4. Clinical Technology

Better use of clinical technical systems and of technology generally will enable more efficient and proactive patient care.

Dr. Pellegrini suggested they need to identify which patient was calling and suggesting the care they needed. For example “It’s Linda Smith, and she’s due for a mammogram.”

       5. Risk Management

“The Healthy You” – Sending better information to clinicians can help keep patients healthy, such as regarding activity level for obese patients.

        6. Smart Innovation

In contrast to standardization, consider opportunities to   customize experience/treatment for patients to deliver personalized and targeted care.

Understanding and measuring outcomes is also seen as key to approaching this evolution. Still, it was pointed out that providers, payers, and patients all understand a positive outcome differently. For example, for a provider the outcome is usually functional, for a payer or employer the outcome is financial, and for the patient it is often quality of life.

Only when these three outcomes are considered at once can we have true value-based experiences.

While Dr. Pellegrini and interview Lee Huntsman lamented the fact that US healthcare is ten times as expensive as other models, like the UK’s system, at present only 3% of UW Medicine’s revenue comes from value-based models, and it costs them $200M per year to maintain EPIC.

With numbers like this, the shift to value-based care has some big uphill battles. Keep fighting the good fight everyone, we know that the burgeoning health community in Seattle and the Cambia Sasquatch will!

Posted in: Healthcare Research, Healthcare transformation, Meaningful Use, Outcomes, Patient Advocacy, Seattle

Leave a Comment (0) →

Let’s Talk About Poop

The ups and downs of the first two keynotes at the 2016 Mayo Transform Conference were mirrored in the session The Challenges of Change which highlighted the story of Cologuard. Cologuard is a joint venture between Mayo Clinic and Exact Sciences whose sole goal for the venture was to create a less invasive way for early detection of colon cancer. They succeeded in this goal and were also the first product to receive FDA clearance and CMS reimbursement on the first day. Cologuard launched to much fanfare on national news.

Did they knock it out of the park? Yes. Are they wildly successful today? No. Why? Keep reading and I’ll tell you.

First let’s start with the problem. Colonoscopies, while effective, are not favored by most people. The preparation is extremely uncomfortable, they require general or partial anesthesia, and people need to take time off work. In addition, in some remote communities, it is difficult to get access to care from specialists. As a result, people put off or skip getting colonoscopies and by the time cancer is detected it is often too late. A clinical challenge with colonoscopies is that they are good at detecting left-side tumors but not right side tumors, the incidence of which has been increasing since the 1980s.

CologuardCologuard solves all of these problems. The test is designed to be used at home and is basically a nicely-packaged stool collection kit combined with specialized testing at Cologuard’s lab. No time, and no procedure required for an individual. As well, Cologuard is more effective than colonoscopy at detecting right side tumors, and comparably effective at left-side tumors. Since it’s a home collection, and all tests are processed at Cologuard, access to care is not an issue either and it’s widely used in the Alaska Native Tribal Health Consortium, which was presented as a success story.

Sounds great, yes? Everyone (aka people who at some point will need a colonoscopy or have already had one) I talked to about it thought so. So what’s the problem? As usual, what’s preventing this innovation is an issue of reimbursement. Colonoscopies are a profit center for healthcare organizations, and they are effective, so this isn’t necessarily a case of a better technology losing. It’s the case of a more patient-friendly technology losing, except in Alaska where there really isn’t a viable option for delivering colonoscopies. As well in violation of CMS, some payers are refusing to cover Cologuard.

Cologuard CEO Kevin Conroy was evasive when asked about pricing, which is more expensive than other screenings but pales in comparison to the coimg_0060sts of a procedure that requires booking an operating room and an anesthesiologist.

Let’s hope that a shift to value-based care changes this. From a patient’s perspective it can’t come soon enough.

PS Apparently a lot of single Cologuard kits are being ordered by cardiologists and other specialists. Conroy thinks they’ve recognized the value and are using the kits on themselves. Harrumph.

Posted in: Clinical Research, Health Regulations, Healthcare Disruption, Healthcare Legislation, Outcomes, Patient Advocacy, patient engagement, Patient Satisfaction

Leave a Comment (0) →

Taking the Fear Out of Total Joint Replacement

I’m not quite ready for a joint replacement but many of our Wellpepper users are, so I found myself spending a recent Saturday morning at a session called “Taking The Fear Out of Total Joint Replacement.” This patient-focused half-day workshop was free to potential patients and sponsored by an organization called SwiftPath that specializes in minimally invasive outpatient total joint procedures. Total joint procedures are feeling the crunch of reimbursement changes in the Affordable Care Act, and one way to lower costs is to perform them in an outpatient facility. However, due to the minimized time an outpatient candidate would spend under the supervision of a doctor, they must be highly engaged in their self-care efforts, including losing weight or quitting smoking if necessary. With people having replacements at younger ages, and often having both knees and hips replaced, the need for engaged patients continues to grow.

I attended the workshop to get an idea of the patient’s perspective on the information and on the procedure. Health systems frequently offer Total Joint Bootcamp but this was intended as an introductory session for people who may be undecided about getting a replacement. The sessions included information about good candidates for minimally invasive total joint replacement, expectations of patients and their caregivers for participation, learning, and recovery, and an overview of the physical therapy involved. The host for the day was Dr. Craig McAllister who is one of the principals of the SwiftPath method. With the exception of the initial opening sequence of surgeons talking about the effictiveness of the methodology, the day was primarily patient focused, starting with risk stratification as a means to determining the best candidates for surgery, through tracking patient reported outcomes, and ensuring patients and caregivers were equal participants in care. There was also a session on determining how a patient pays. Dr. McAllister noted at one point that this entire patient-centered approach was completely different than what he was taught in medical school.

Two of the most powerful sessions were also patient-focused. The first was a patient panel consisting of an OR nurse who had a recent knee replacement and biked to the session, a few people who had experienced both in-patient and outpatient replacements, and one who was not originally a candidate for surgery because he was a smoker. While quitting is a requirement for the surgery, he initially didn’t want to until he realized that he would lose his opportunity to have Dr. McAllister perform the surgery, concluding that he needed the surgeon more than the surgeon needed him: “If I didn’t do what he said, the next patient in line would.” I thought this was a really interesting approach to motivating change: be inspiring and selective, not punitive or even threatening. All of the participants talked about having low pain levels, and some not using the prescribed opiates. As part of the program, Dr. McAllister closely tracked their post-surgical pain, nausea, and opiate usage. One patient disclosed that he drove himself to his first post-surgery physical therapy appointment, and although this was not encouraged, his PT actually gave him the all-clear to drive home.

The final session of the day was possibly the most striking. It featured a police officer and the founder of a drug addiction non-profit, Amber’s Hope talking about opiate addiction. This session was sobering, both from the impact of the drugs but also because measures to control these dangerous substances have actually exacerbated the problem. Since opiates cannot be prescribed by phone, and post-surgery patients are not mobile enough to visit a physician, get a prescription, and take it to a pharmacy, physicians need to prescribe what they believe will be enough pills prior to surgery, which can lead to leftover pills. Most non-prescribed usage of opiates comes from these leftover pills, which means that educating patients on how to dispose of them is key. In Kirkland, Washington where this session took place, for example, the only way to dispose of them is to take them to the local police station. (FDA recommendations for disposal of prescription drugs can be found here.) At Wellpepper, we track the use of both over-the-counter and prescribed painkillers as part of treatment plans. We do this for two reasons: first, it’s a valuable piece of information about a patient’s pain levels and recovery time, and second, too often these pills are prescribed as needed and usage isn’t monitored, leading to a nationwide opiate problem.

I attended this event so I could better understand the people who will eventually use our software. I learned a lot more about changes in care delivery, and got some great ideas for continuing to engage patients that you’ll see in future updates to our products.

Posted in: Behavior Change, Opioids, Outcomes, Patient Advocacy, patient engagement, Patient Satisfaction, Physical Therapy, Seattle

Leave a Comment (0) →

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

Leave a Comment (0) →
Google+