COVID Treatment and Vaccine FACTS MATTER!

This morning took some time (we have plenty of it, right?) to review the open clinical trials in the WHO registry and ClincalTrial.gov for COVID treatments. Especially to determine if I needed to start taking my chloroquine we used to clean fish tanks. (Uh, that was a joke, that killed a man...) Considering our president tweeted that we will have the treatment soon and the amount of misinformation wrapped around the actual information, I dug in and found the details myself. Of course I did...

The open clinical trials are being tracked and I took a quick look at those that MIGHT result in either valid treatments or a vaccine. I put the curated potential treatments (uh, left out the Social Media impact?) into a Google Sheet with links to the Clinical Trial registry itself. The most important FACT is that there will not be an immunization soon. That is what is so misleading about the tweets and media hype. Clinical trials are complex and the general public would not have an appreciation for that complexity. So misleading tweets and hopeful media reporting without context are dangerous. Locally, we all appreciate the Hype around J&J putting so much effort into ramping up future production going into next year. It was good that it had such a positive impact on J&J stock price and now they have a way of filling up that manufacturing void driven by the opioid crisis blow back. But I digress.

There will be no clinically proven CURE nor a VACCINE anytime soon. Continuing to adhere to the CDC and WHO recommendation to prevent sickness are still the ONLY real solution. But watching the race does provide interesting insight into a somewhat frightening industry. Just remember, the Opioid crisis provided the general public a view into what happens when the clamor for a solution overshadows the scientific methods that ensure safe usage and application.

A final share of a sad fact that I uncovered during my morning research which was shocking and made me cancel my nightly ZOOM Happy Hours:

Advocating for a Choice to Leave Poverty Behind

Reading through the week's news and interesting commentaries usually leaves me fired me up on some topic and this week was no exception. My first read of the morning had to do with recent updates from the Pew Company on Public Opinion on Abortion Rights. I was was not seeking any specific information out on this particular topic today, I just happen to believe that having an informed opinion is better than an uninformed one. I support Pro-Choice for reasons we won't go into here (at least today!), but wanted to understand where the rest of country stood. Of course Trump's "punishment" gaffe made this a trending topic, and not sure how I feel about the reason for having to be more current on this topic! My takeaway from reviewing is an understanding that this polarizing issue pretty much splits most Americans, with those against abortion in most/all at 41% of the total population and 56% felt abortion should be legal in most/all cases. Interesting. Hard choices for anyone really.

Then I read on into my weekly dose of non-partisan Constitution reading (yes, I am that nerdy) and ran across an article on what would happen if the Supreme Court ratifies or rejects the view at the case of Zubik v. Burwell, representing non-profit organizations, that may have objections to contraception and want to be exempt from required health coverage for contraception for employees. That's a continuation of the lawsuits brought on by the Hobby Lobby case (representing public corporations) in case you are not up to speed on your Supreme Court docket! Of course this topic is important due to the increased spending on health of women of child-bearing age, and projects I am personally involved with that are focused on pregnant populations and improving their overall health. But that was not really what was interesting. It made me wonder whose interests these cases were really focused on? Reading the overview of who was involved and whose interests these non-profits were focused on was quite a meandering journey! [Note that if you are looking for real people that have pious beliefs, keep looking as it's really an institute known as a  powerhouse law firm, not known for their intimate stories about raising a family!]

Since I started the morning wiht the knowledge that that only 41% of the adult population currently believes that abortion should be illegal in MOST cases but only 16% believe it should illegal in ALL cases, it made sense to me that this is the population who might therefore feels that abortion could be extended to include contraception. Again, not trying to argue the belief, it is what it is even though I have a different view. If we start with only 16% of the US population potentially opposed to contraception as a type of abortion, simple math tells us that the majority of our population that is most impacted is statistically NOT against contraception. So this is a minority (16%) imposing their will on a majority (84%). Even more telling is the fact that Centers for Medicaid and Medicare Services has stated that

"In fact, nearly 99 percent of women in the United States have relied on contraceptive services"

So I feel fairly confident my simple math will apply here. If we assume that most women are actually seeking contraception then who does this case really benefit? I acknowledge that these issues are complex, but it does come down to choices and who decides what what choices you have. I do feel the need to represent the stories of a few of those women in the 84% who need an advocate in their lives. These stories are real. Access to contraception is a major effort within the healthcare industry and it drives significant socioeconomic factors for these women for the most of their lives. There are young women with unfortunate circumstances and issues such as homelessness and mental illnesses who are not prepared for self-care, let alone for caring for another. Where are these stories in the push to eliminate a choice that might give them hope to live a life outside of poverty? Who is advocating for the women who just need a few choices that many of us might not need? Reducing contraceptive choices leaves women with much harder choices to make.

And furthermore, we are all aware of Trump's "shining moment" follow-up that came when he was asked whether the man who created an unwanted pregnancy should be punished, too.:

“I would say no,” Trump quickly decreed.

Therefore, in a Trump presidency, the companies who want the exemption from contraception might directly be ensuring women who end up with an unwanted pregnancy and choose to abort are punished (I don't believe this would ever happen, but it works as a great summary point here). And is that what the non-profits in the case before the Supreme Court really stand for or is it just a byproduct of imposing their minority view on a choice that helps avoid much harder choices? I know, lots of assumptions, but look at how politicizing women's choices drives women even further away from living in a world where advocacy makes a difference.

I will leave you with what I thought was the most telling stat that summarizes my whole view...

On Becoming a Health Advocate

It has been more than 13 years since I was pregnant. However, now that I am working with a younger generation dealing with pregnancy at work, time off after the baby arrives, and figuring out how to balance life after returning, I am being exposed to the same challenges that I experienced so many years ago. Initially, as we were sitting around over a glass of wine (a measly 2 oz. for the breast feeding moms!), I was so happy I did not have to go through this again. Listening to stories about having to “instant message” during time in the “Mother’s” room made me remember the dread that came with trying to figure that all out for myself. Once was enough. Yet I appreciate that these challenges are not limited to just moms with babies trying to balance child care and work schedules. Many of us have parents or family that require more time and demand the same attention to balance our careers and home life. A sick family member who needs to be driven to appointments or needs some extra help around the house can require the same type of considerations. Maybe it is not even a family member, but a neighbor or a friend, who would benefit from an extra few hours set aside just for them, you just have to find the time. When you consider the “network” of care you are engaged in, you can quickly see that in reality, you are advocating for others in very formal and informal ways beyond what you might have realized.

My mother recently shared with me a story about her efforts to coordinate health services for my dad when he was sick this winter. He was admitted to the hospital, not once, but twice. Discharged, but then referred to a rehabilitation facility. It included plenty of new doctors and specialists at each facility that needed to review his health and case workers who sometimes knew his situation but more often did not. The story itself did not come without a surprisingly large number of “that’s just crazy” comments. (Honestly, it seemed as if random acts of health care occurred during this 3-5 week situation). We lamented at the end of our chat, that without an advocate, in this case my mom, who knows what might have happened. I started thinking and researching about the health advocacy services we have in our community and available to us to support this health advocacy. Because no one should ever have to think of healthcare as random.

What is health advocacy?

Health advocacy encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public.

I realize that by that definition, I am not very prepared to be anyone’s health advocate, perhaps not even my own. I prepared for becoming my child’s advocate because I read and learned as much as I could about what being a parent and a mother means. What in our many years of being family members, students, or employees prepares us for health advocacy? I would argue that our best preparation has come from sharing those “that’s just crazy” doctor visit stories. Very few of us have read significantly about other’s tales nor do we have experience beyond watching the current medical drama unfold on television. Technology is not very helpful here as I have lamented recently and while that is evolving, today we are left with information and healthcare knowledge gaps. That leaves us really unprepared for the health advocacy that is in our future, [(as a side note, if you have not read about Paul Kalanithi, I strongly encourage it as a good start to your knowledge journey!]

We will all have a role to play in the future of health advocacy. Just consider for a moment all of the advocacy you are already doing. Most of us probably have a pretty simple view, like figure 1. More and more of individuals are developing a more complex synthesis of interactions and concerns as our health care system evolves to one in which advocacy will have to play a bigger part. We have already talked about the need for Personal Health Record and the information needed. Advocacy though, goes beyond information in a PHR and helps us all drive access to the care needed and helps ensure the quality is there. Healthy individuals drive very little demand for advocacy in their journey because healthy people can take care of themselves and self-care is a primary focus. When a person’s health is not fine, their journey gets more complicated and interventions to drive specific outcomes ensure that advocacy increases in importance.

In a broad sense, health advocacy includes Patient Centered Care delivered through Patient Centered Medical Homes, Pregnancy Centering Programs, and care managers. All of these are impacting the healthcare landscape and are forcing the evolution of our healthcare system as a whole. Advocacy might come from a health insurer, a hospital, or clinical researchers, but there is no doubt you (or someone on your behalf) will be a part of that network. Regardless of the source, the intention is ACCESS and QUALITY CARE. That intention is best served by considering the patient journey and experience. Our US Healthcare systems are focused on those improvements and it wouldn’t be a good healthcare blog unless I mentioned that the Triple Aim.

Triple Aim is focused on”: Improving the patient experience of care (including quality and satisfaction); Improving the health of populations; and. Reducing the per-capita cost of health care. 

Preparing for health advocacy means you must ensure you have knowledge of how access works and learn what good care looks like. Frankly, you have to learn how to advocate for someone else besides yourself. Not an easy mission, but you have chances to support your family and friends every day. I would challenge readers to consider improving their advocacy skills and then take it to the next level by truly finding someone in your life you can advocate for. What have you done to advocate for the women and men in your organization who have found themselves struggling with balancing career and home? Can you think of at least one situation where you tried to help an individual with this struggle? Were you willing to go up against the “rules” in place or did you simply help them work within the confines? Ask your parent if you can join them for their next regular doctor visit. How satisfied are you that he/she has your parent's best intentions in mind as they talk to them or examine them? What do you do if you don't? Challenging ourselves to publicly support a cause is already something you have to do.

Do you have what it takes to be a good advocate? I think my daughter still does...

Put the Personal back into our Health Records by Adding Advocacy

My personal wellness tool (e.g. Fitbit) tells me to track things like how many calories I eat, how much water do I drink, how many steps did I get today, how did I sleep? But when I visit my physician, I summarize all of this wellness activity into a single answer to a single question “Are you maintaining a healthy lifestyle?” Standard answer: “Yes, I am doing the most of what I now to be the right things most of the time”. And guess what? I probably give them the same answer whether I am getting 10,000 steps a day and 8 hours of sleep or 2,500 steps and 3 hours of sleep. I know these factors are health risks and I also know that giving this logical yet slightly misrepresented answer to my physician keeps him from telling me that I need to sleep and walk more. Wouldn’t it be nice if we each had our own personal advocate responsible for communicating my health missteps directly to my physician? This sharing of personal data about known risk factors has many barriers that an advocate would ignore. Like taking on that grumpy nurse glaring at you over her glasses as she reads your medical history and states “This is not good for you because…” Yes, I definitely see a need for advocacy around getting individuals more engaged in their personal health.

Advocacy. It can help drive patient engagement and it’s a hot topic my circles. It’s more than just tracking steps or how many times I work up last night. It’s driving access to a job that pays enough to eliminate working 16 hours a day. It’s helping impart the risk to a child who has not had a pertussis vaccine when there is an outbreak of whooping cough in the community. What if my personal advocate is really just the transforming layer between what my health record exposes and what my health could be?

This week included many hours working on an implementation model for a Population Health Management project. The specific task is to define the clinical and social “triggers” and determine the impacts of specific clinical scenarios with the clinical operations areas. The challenge is that many of these triggers come from the inclusion of social and safety factors for that patient.  Here is a real scenario: A woman of child bearing age with housing security may be considered healthy and her pregnancy itself may not indicate a significant risk as long as she keeps to the prenatal care plan. But if she is homeless, we have a “trigger” and her pregnancy is deemed a much higher risk because we know that this type of social determinate has a very real impact on that clean and tidy prenatal care plan we want her to follow to ensure the delivery of a healthy baby. She might actually lack shelter completely and the fear of Child Protective Services taking the baby when born can be a significant barrier to her even seeking health care.  Discussing this “particular “trigger” led us down the path of “what database field can we put this information into if we can even get it” and the inevitable “IT, you make this so hard…” discussion. Why? Because personal information is designed to come from the person and we are trying to indicate a future health outcomes driven by non-medical factors.  The reality is that a social worker or a community advocate who interacts with her during a home visit may discover that she is actually living in a vehicle in the driveway of her step-brother’s apartment building. This very personal scenario clearly was not documented and indicates a risk to the woman’s health that was not disclosed or known.

The exploration into this topic sparked a new deeper understanding on the difference between medical records, health records, and personal health. In the health care industry, we have reoriented the focus from the personal health to the patient data we can use to ensure we bill appropriately and manage expensive diseases. Not to suggest that this is not important too. Yet, when I read this disheartening article advocating giving access to health records to everyone BUT the patient, I realized that twisting the focus back to the patient with an advocacy spin is the next evolution in patient-centered care, but advocacy HAS to be seen through the personal lens.

Let’s go back the basics. An electronic medical record (EMR) is a digital version of a medical chart with patient information stored in a computer. Remember those BIG folders your doctor kept in cabinets that represented each patient’s record according to that doc? It’s that. An electronic health record (EHR) is a digital records of health information. Sure, it has all of your medical record, or your whole EMR. EHRs can also contain other relevant information, such as insurance information, demographic data, your data from your medical devices such as a glucose monitor, and other information that may factor into your health status. For those of us in the IT industry, the distinction between these is not new. We have implemented EMR and EHR systems for years. In the beginning, EMR’s were in the provider space and Payer’s had EHR’s. But soon, it was recognized that the EHR contained a “richer” data set and could be used to integrated multiple encounters into a single view. Every major software company who has a healthcare solution has an embedded (probably proprietary) EMR or EHR solution built in. Hospitals and Physicians create and consume them. Health information exchanges (HIE’s) are built around them. Health Insurers validate billing from them. But do any of us really know what we want to know what the EHR looks like?

This week’s challenge of figuring out how to design a solution to capture information about these non-medical factors led me to form the following question: What if instead of calling it an Electronic Medical Record, we labeled it Personal Health Record so that all health service providers and the patient would better understand the impact of these risks? Ta Da!  

Figure 1

Then I realized… This already exists. The health care industry defines a Personal Health record (PHR) as a record controlled by an individual patient .  The source of the information in the PHR may well be an EHR or you might enter the data yourself.  PHR’s  have been around a while. In the 70’s,it was simply a characterized as the idea that “notes on one’s health” were basic references to provide historical context. But by the 90’s, the “P” was more likely to represent “Patient” and represented a shift to “patient-centeredness”.  Hence the resulting swap of the “P” with “E” for Electronic. However, Patient and Electronic seemed to reduce the idea that it was personal information that might have suggested factors beyond medical needs. The idea of Personal didn’t go away completely, the idea of a “Patient-held health record” has been researched and studied and contributed to the whole idea of patient-centered engagement. However, the drive for the EMR/EHR to play a significant role as the core to disease management took the spotlight and PHR took a backseat as the industry struggled to incorporate the management of specific diseases into clinical operations.  During this time, the concept of the PHR evolved to “data managed by the patient”. If I haven't bored you enough on the history of EMR/EHR, read this: 

"Electronic personal health record (PHR): a private, secure application through which an individual may access, manage, and share his or her health information. The PHR can include information that is entered by the consumer and/or data from other sources such as pharmacies, labs, and health care providers. The PHR may or may not include information from the electronic health record (EHR) that is maintained by the health care provider and is not synonymous with the EHR. PHR sponsors include vendors who may or may not charge a fee, health care organizations such as hospitals, health insurance companies, or employers." --Characteristics of personal health records: findings of the Medical Library Association/National Library of Medicine Joint Electronic Personal Health Record Task Force. [J Med Libr Assoc. 2010] 

That version actually states "not synonymous with the EHR"! Today’s care management software solutions do NOT make it easy to capture and manage information about the patient that is social or safety based because there were designed during a period where a PHR was being defined as patient-owned. Since we know managing our own personal health data is not simple for many reasons (have you TRIED using MyChart???), the industry is left with an information gap. A physician may capture an average sleeping time of 4 hours a night in a patient’s medical record and note that this lack of sleep is a risk factor for impaired control of blood glucose. What if they captured the reason for the few hours of sleep was due to the patient having three part-time jobs required to afford the food and housing needed each month? If the patient had an advocate looking at these factors, the path to address this outcome might look different. That advocate may connect the individual to specific skill training opportunities that would help them transition into a higher-paying role at an existing company that means they quit one of their other part-time jobs.

Figure 2

Let’s start thinking of this advocacy in terms of the impact to both the known health information (EMR/EHR) and a patient’s personal health as the Personal Health Experience. That experience includes a role for advocacy that has to be taken into consideration. If we layer this between the doctors and ourselves, we might find that our elusive personal health is much more meaningful. In Figure 2, the relationship of the various models shows that advocacy might be a key link. Not to suggest that the challenge of making this link is easy or without it's own challenges. But we might even find a way to achieve a healthier lifestyle that doesn’t just require 3,000 more steps a day!

Using Self-Care to Drive Health Outcomes

I am currently working with a healthcare client to help build a mobile app that will support their maternal population. We have been working on the effort for almost a year and are finally starting to see the fruits of our labor. I am lucky to have an amazing client manager who truly understands the value of using technology to drive positive improvements to health outcomes. Not to say that the road to build and deliver this solution has been easy. In fact, it has been enlightening (focus group feedback) and disappointing (information security challenges) all at the same time. But we have stayed true to the vision that we developed. At least so far. I was recently looking back at some of the work we did a year ago to define the experience we wanted for our population. And then I compared it to what we had built in our initial solution. It is always exciting to see a strategy develop, and even more so when there is an opportunity that the solution will save lives.

I thought I would share one of the models we developed to help communicate one of our key vision points regarding the idea of linking Self-Care to Outcomes. Our vision was that a pregnant woman could use the mobile application to perform self-care functions such as making a prenatal appointment with their obstetrician. We assumed that making the appointment would drive the outcomes. But after analyzing existing research and reviewing the efforts that others have done in this space, it became obvious that we could potentially have pockets of "no-shows" as high as 15-20% (concentrated urban areas). Doesn't do much good to enable simple appointment scheduling if the consumer doesn't make it to the appointment.  The real value of the mobile application is in removing any barriers or obstacles that might exist for that consumer to make and keep and that appointment. Focus groups helped us to better understand what keeps the consumer from getting to the appointment and we determined that scheduling transportation was a key barrier. Once we understood this, we extend the scope of making an appointment to include the scheduling of the transportation, ideally done at the same time. That may be a simple, some might say obvious adjustment, but it has the potential to make a significant impact on the outcomes we are trying to hard to to improve.

Figure 1

This was just one example and the figure above shows a few more areas that benefit from this extension. We now have incorporated this type of model into our idea generation and review process. This obviously applies beyond the type of program we are leveraging it for. Try it out and let me know how it works for you!