Government & Policy

Sue Schade explains why she will approach the next four years with an open mind. 

John Halamka, MD, served the Bush administration for four years and the Obama administration for six. Change in Washington happens incrementally, he says: There is always an evolution, not a revolution, regardless of speechmaking hyperbole.

Maybe it's time for a discussion about what people want from the U.S. healthcare system.

Recently, planners of an upcoming event asked me some questions and here are the answers: 1. How would you define the role/responsibilities of a “patient” advocate? The patient advocate can be defined in several ways. Sometimes this is an official staff member in a facility. They can operate as a patient navigator or customer service operative.  In the best scenario, their job is to help the patient understand the processes and options in care within the facility. In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members. Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection. In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own difficult medical decisions, and review and negotiate medical bills. Often the patient advocate is a close friend or family member who is not paid for their service. This advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time. Finally, there are patient advocates focused on policy. I am often classified among this category, although I prefer the term patient activist. A patient advocate focused on policy attends local, regional, state, and federal meetings to provide a patient perspective in policy decisions.  *(This is by no means meant to be an exhaustive definition of a patient advocate. Just how I define it in response to this question. There are several other resources out there to learn more http://pacboard.org/2016/03/09/patient-advocacy-vs-medical-advocacy-view-from-the-pacb/ is one.) ** (Additional edits were made on 10-5-16 to clarify the responsibilities of patient advocates in relation to the AdvoConnection.) 2. You do a number of these sorts of speaking engagements and presentations around the country. Are there some unifying themes- – clear trends – you see, common ideas that many people share about their worries or attitudes toward healthcare? Patient safety? Patient advocacy? I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH legislation morph and change. Patient access to data at stage one of meaningful use had budding teeth and at stage two it got poor fitting dentures. I have watched the ACA become the law of the land, only to see constant steps to repeal it.  I watched the concept of patient engagement grow from a demand in small healthcare meetings to a hashtag on twitter (#patientsincluded), to trend of conferences inviting patient speakers. I hoped that the next step was true partnership in decision-making and design. Sadly, of late I have often heard that “patient engagement” was out of fashion. We are now onto MIPS and MACRA and massive ACO’s.  I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see alue Based Care begin to role out, as it addressed so many concerns of these advocates. I am saddened to hear how many attendees at conferences expound on their love for fee-for-service.  Or twist the intended purpose of reducing readmissions, by leaving patients in hallways for days to be “observed,” but not admitted after complications. The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in healthcare. There are also amazing individuals, often on Twitter, (check out #hcldr), that will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately. 3. Will patients ever be like consumers of other products? Outside of elective procedures or choosing a birthing place/option, how much real consumer choices do patients have in their healthcare? How would you like to see those avenues expanded or re-routed? I hate the word “consumer” when applied to healthcare; it assumes we take and never give. Partnership in care requires two-way communication. Care is always about choice. When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure. When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care. Which may include a hospice path, if that is their choice.  We have a choice right now. The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that the customer will decide which items to buy rather than the shopkeep.      4. How would you like to see healthcare systems and hospitals – particularly public and teaching systems – involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting? Patients, caregivers, and patient advocates need to be present in meetings throughout the facility.  For far too long we have been forced into the role of lobby designers.  We ask that you invite us to take part and provide appropriate recompense for our time.  Or schedule the meeting after the workday is done at the facility.  That would be fine.  Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be.   You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.   5. How would you describe your painting style and approach? My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused. As a few people have told me over the years,  “Your work is often sweet and disturbing at the same time.” 6. Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors, care providers? As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.  It is a very nice feeling to be in the zone and at one with the cosmos. But the creation of art could feel like a nail ramming through my hand, and I would still create. I use art as a tool and the goal is to impact others. It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.  To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.”  7. Of all the art you’ve made--your Walking Gallery, the murals -- can you choose one piece and describe it and explain why it’s a piece that you especially want to share? My favorite piece is “Are you alright?”  In that painting, I captured my late husband Fred.  He stares at me from that painting like he is still with me.  Still alive on pigment covered canvas.  Still urging me to help him, a patient. And every day I do exactly that. This blog was originally published on Regina Holliday's Medical Advocacy Blog.

How can I not comment on the most watched Presidential debate ever? There were 84 million people watching the debate. It was up against Monday night football and in my temporary town, the Cleveland Indians were clinching the American Central championship. For women who have dealt with blatant and subtle sexism throughout their lives and careers, it was the ultimate show.   As my twitter feed and Facebook filled with commentary Monday night and all day Tuesday, the gender politics came into focus.  “Sexism is a man screaming he has a better temperament than a woman who has been patiently waiting to speak after being interrupted 10 times.” A tweet from @nickpraynerr shared by Hostile Politics “Finally the whole country will watch as a woman stands politely listening to a loud man’s bad ideas about the field she spent her life in.” A tweet from Alexandra Petri (@petridishes) | Twitter shared by Being Liberal “And now, a completely unprepared man will interrupt a highly prepared woman, 51 times, only to prove he actually has very little to say!” Ezra Klein sharing a video clip from Vox to prove it. “To the men amazed Clinton hasn’t snapped: Every woman you know has learned to do this. This is our life in society.” A tweet from E. Van Every shared by New York Times The headline that really grabbed me was this one – “Tonite’s US presidential debate will be shown in gender studies classes for years to come.”  (From qz.com)  Yes, it will be quite a case study to dissect for future generations. This one goes beyond commentary and gives some good advice – “Next time you think about interrupting a woman in a business meeting, think about how Trump looked tonight.” A tweet from Rob Bailey @RMB I have written about women and work, the challenges of balancing career and family, and encouraging girls to pursue STEM careers. My unfaltering support for women’s issues should be no surprise. For all the men who “get it” and routinely show support and respect for the women in their lives and their female colleagues at work, I am most grateful. It is way past the time for men and women to stand together and fight sexism in all its forms in whatever situation we find ourselves. We are better than this. And we owe it to ourselves, our children and our grandchildren. Resource: Harvard Business Review – Why Hillary Clinton Gets Interrupted More than Donald Trump, by Francesca Gino This blog was first published at: sueschade | Health IT Connect          

"As I've said many times, one of the great challenges we have is that the 2015 Edition final rule has an enormous scope extending beyond meaningful use with the notion that it can be coupled to every government healthcare IT program," writes John Halamka, MD.  

Mortality rates have not improved, and obesity is on the rise, but there Is some good news.

The answer to that question, says Beth Israel Deaconess Medical Center CIO John Halamka, MD, is that we need the right amount of the right regulation and legislation.  

Starting in 2019, Centers for Medicare & Medicaid Services, will change how they pay physicians in a profound way. Unfortunately, the details are complicated and confusing, and many of the particulars have yet to be worked out, which has led many healthcare leaders to glaze over the details and focus on more immediate concerns.

Now that we have experience with two stages of meaningful use, it's also clear that a three year cycle is needed to ensure safe, high value, well adopted, introduction of new IT functionality.