See the S4PM comment letter.

While the amendments required in order to make these changes are small, surgical edits, final action and implementation of this rule could take up to a year or more.

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an RN, concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care. Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood. If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency. Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host? How long is the wait? It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

The ONC post says:

The Plan demonstrates how we will build off the foundation of meaningful use to unlock the power of information to:

• Enhance our ability to study care delivery and payment systems
• Empower individuals to improve and participate more in their care
• Improve care, efficiency, and population health outcomes, through tools such as clinical decision support, real- time feedback of performance to clinicians, and targeted public health campaigns

The Plan has five Goals, laid out in the post.  The Society’s comments on the ONC Strategic Plan focus on one of these Goals.  A brief excerpt follows:

Our comments focus on Goal IV of the Federal HIT Strategic Plan – “Empower Individuals with Health IT to Improve Their Health and the Health Care System.” This Goal breaks down into three Objectives, and a number of Strategies to achieve each Objective. The Goal and Objectives are laudable, but we would seek to strengthen the Strategies — by involving patients in the development of the system — so as to increase the likelihood of achieving the Goal in a meaningful way, and to do so sooner than five years from now.

One overarching comment on this Goal is that it is not integrated with the concept of care coordination, which is discussed elsewhere in the strategic plan. In order to fully realize the goal of patient centeredness, the patient must be involved in the coordination of his or her care. This omission highlights the perspective of the ONC on health care as something that is provided to patients rather than as a partnership process that involves patients, clinicians and non-professional caregivers. The patient-centeredness criteria promoted as part of the proposed rule on Accountable Care Organizations should be incorporated into the Strategies used to achieve this Goal. While these criteria are not all health IT-specific, the ONC makes the point in the strategic plan that that health IT enables patient empowerment, transparency, and achievement of the Triple Aim. Thus, all process, systems and standards improvements called for in the patient centeredness portion of the ACO rule should be brought to bear on the health IT strategic plan.

(You may read more on this last topic at an earlier post on ACOs and patient-centeredness.)

The Objectives in play here are as follows:

• Engage individuals with health IT
• Accelerate individual and caregiver access to their electronic health information in a format they can use and reuse
• Integrate patient-generated health information and consumer health IT with clinical applications to support patient-centered care

Can’t argue with the Objectives; as noted above, though, some of us e-patients are impatient, and would like to see these Objectives reached sooner rather than later.  I invite you to consider the comments offered on behalf of the Society for Participatory Medicine, to add your voice in the comments below and — through May 6 — in the comments section on the ONC blog linked to above.

One key thread running through our comments is that policymakers must remember that health care is not something done to patients, it is something done with patients, so a strong patient voice must be heard, and must be built into the system.  This is the time to do it, as we are framing out a brave new health care system.

Finally, as an added incentive to read the comments, please note that they include a link to a post by Regina Holliday containing her explication of a recent allegorical painting of hers — well worth the read, as it is an eloquent statement of the health IT and patient engagement issues at hand.

David Harlow is a health care lawyer and consultant. He serves as the Chair of the Society for Participatory Medicine’s Public Policy Committee. His “home blog” is HealthBlawg.  You should follow him on Twitter.

It could be a joke and it could be funny! Instead, it is just the sad truth. And embedded in this sad, sorry truth, lies a complete lack of democratic ideals and a deliberate attempt by various parties to keep as much control of your health data as possible. The main communication tool in doctors’ offices at the end of 2009 remains the fax machine, a dinosaur-like, throw-away appliance that is no longer part of the communication tools used by modern communicators and regular users of the Internet. This is in contrast with what is taking place in the highly competitive and innovative world of social media and open streams, and you must conclude that there is a concerted effort by segments of the health care professionals to remain technologically backward.

Close to $2.5 trillions have been spent on health care since President Obama announced his decision to reform the health care system. A year later, as expected,  all the talk in Washington remains about:

• the end/restart/end-again of the public option
• the expected final/interim/temporary definition of “meaningful use”
• the amount of savings/taxes/additional expenses
• move from FFS (I really mean Fee-For-Service) to PFP and
• comparative effectiveness/death panels/healthcare rationing

Have you heard ANY politician talk about patient/individuals empowerment in relation to health care reform? I have not! Health care reform is still 100% about reimbursement reform and 0% about social innovation. No surprise when individuals so often experience dehumanizing events when they interact with the medical system.

Patient empowerment cannot happen in this world without access to the data points that are necessary to make informed decisions. The new healthcare system must offer us, the end users and the people who indirectly pay for all of it, the ability to access directly and without any limitations all of our health data and the ability to create apps to use what is ours, in any form we deem acceptable. Last spring we crafted the Declaration of Health Data Rights for a good reason. We demanded ownership, access to a computable version and the ability to share our own data, including test results, prescriptions and tests, for a very good reason. Not much, if anything at all, has changed since then despite wide media coverage of the demand. My doctor still communicates with others through his fax machine. I am an original member of a large spiral CT scan clinical trial done at Cornell medical center and I still cannot get a copy of the scans, a digitally native application! Tell me why!

At the same time, just 3 days ago, in the company of 2,500 developers, you could experience “live” the competitive level in the world of social media. At the “Le Web 09″ conference in Paris speakers representing Twitter, Facebook, MySpace, Ning, LinkedIn & SixApart all announced that starting in early 2010 anybody can have full access to their Open Streams. That means that anyone can have access in real time to all the conversations taking place through all these communication platforms. Twitter also announced that over 50,000 apps, each connecting to its platform, form its ecosystem. The disconnect between the 2 worlds couldn’t be stronger and shows why the current efforts at health care reform will fail if we the end users and innovators cannot full access to the data. That’s right: access to my data is the key to health care reform.

Adam Bosworth posted the following three days ago. It perfectly reaffirms the absurdity of this disconnect:

Much of personalized wellness advice depends on basic lab results like the lipid panel. The person with a total cholesterol of 150 may need different advice than the person with a total cholesterol of 250, for example. Today, if I go into a lab to get my blood drawn, say for my checkup, I cannot download the data into my personalized wellness tool of choice unless my doctor electronically approves it.  Not because the lab cannot support this—90% of labs performed outside hospitals are covered by Quest Diagnostics or LabCorp and both support electronic data transfer.  Rather, a doctor’s electronic approval is required to release the lab data to the patient, even when the patient wants this data. Well, most of the doctors aren’t using electronic systems and most of the ones who are don’t have the ability to approve these transfers, while some of the ones who do have the ability choose not to.

Even weirder, if you try to get your client ID with Quest, you’ll soon  realize that YOU are not the Quest client. Your doctor is. Your doctor owns your health data! Will he/she still have a fax machine when you request the ability to connect, analyse and share all the data you personally collect as part of the Quantified Self movement, in addition to some of the genetic data that has been given to you by 23AndMe and the data that will certainly come from the Open Stream of companies like PatientsLikeMe or others that will use the growing power of Social Structured Data tools like what you can access at Factual. Obviously, in the highly social information age, knowledge building is constantly more about  connections:

• between us and others,

• between us and our data and,

• between data from us and from others.

That is why I strongly support Adam when he says:

I call on DC and the State Legislatures to change these laws [...]  Pass laws that specifically give the lab companies the obligation to deliver our data electronically directly to us – the people, if we want it. If you desire true health care reform that actually will lower costs and curb illness, unleash the power of the innovators to help consumers with personal wellness as mint.com does with financial wellness. Release our health data.

Ted Eytan MD took the picture and posted it on Flickr. Today he sent this email to Reggie:

======

Dear Regina,

You made it, scroll about 3 pages down:

http://www.bmj.com/cgi/section_pdf/339/sep09_3/b3681.pdf

People spend entire careers hoping to change practice by getting published in the BMJ (one of the most prestigious medical journals in the world, if not the most prestigious), and you did it in 2 months through the experience reflected in your art. Incidentally, the publisher had no idea who I was or what I do when they found the photos I took on Flickr, so this was all you. What does that say about the power of the patient voice!

======

And what does it say about the power of Regina’s painting to communicate?

While we’re at it, I ask that you read the caption: “Fred Holliday died from kidney cancer aged 39 the day the Senate took up health care reform. Without health insurance he couldn’t afford the tests to investigate the cause of night sweats, fatigue, and bloody urine.”

Esther Dyson, Jamie Heywood, Rep. Jerry Nadler (D-NY), and I were asked to take on a breakout panel entitled, “From Participatory Politics to Participatory Medicine: The Coming Revolution in Health Care.” Cool, right?

Esther Dyson, Jamie Heywood, Jerry Nadler, and Susannah Fox

Via email, Esther suggested we skip the usual speeches and just tell the audience the questions we’d like to be asked and have a truly participatory session:

• Jamie was going to talk about PatientsLikeMe, HealthDataRights.org, and the power of patients to take control of their own data.
• Esther was going to ask how openness, transparency, measurement, and sharing of data affect health care.
• I was going to talk about which tech trends might forecast higher (or lower) levels of involvement by all Americans in both participatory medicine and participatory democracy.

Then Rep. Nadler arrived and said he’d been told that this was a panel about health care reform. Well, kind of. Not really. But we had to get started.

It didn’t go well.

Check the tweets:

@RadioBabe Interesting panelists, interesting ideas, but overall this health care panel at #pdf09 has been awkward and disappointing.

@lolamacc health care panel = very scattered discussion with little focus, too many issues, little really that was clearly conveyed

@mpesce Wasn’t this panel supposed to be about participatory medicine? I don’t see a whole lot of that going on here.

Ouch! Nobody was nauseated, right?

When I described the situation to Chris Schroeder, CEO of HealthCentral, he reassured me: “Your panel didn’t fail. It sounds like the audience got to see first-hand just how far technology remains removed from the heart of the health care policy debate in Washington.”

I’m even more comforted by the tao of Ted Eytan which teaches that “no communication is ever over” and “everything gets more accurate with more interaction.”

Judging from the majority of tweets, we did get quite a few points across, so let’s build on that:

Read more about Esther’s quantification of everything and the principles of HealthDataRights.org. Where do you come down?

Check out PatientsLikeMe. Jamie says people who use it will live longer; people who don’t won’t. What do you think?

Dr. Google is a pretty good diagnostician, most people say online health info is helpful not harmful, but access is unevenly distributed. What’s up with that?

Please leave a comment here, on Twitter, point me to another venue, or otherwise continue the conversation.

What is the risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?

Discussions about the reform of the system are clearly no longer directed to improve care, outcomes and  patient experience. On the contrary conversations have become almost exclusively about lowered costs. It is as though most of the people involved in thinking about the reform really don’t want to remember that medicine (the topic central to health care reform) is all about you and me, the current and future patients, not about saving an array of professionals whose income has become totally dependent on the accumulated and constantly growing dysfunctions of the system.

Health care reform should start with simply accepting that all human beings have the right to be treated as human beings, in sickness just as much as in health. As long as our bodies remain the best income proxies for millions of Americans whose business depends on extracting as much value from sickness as possible we will have a nasty case of Goodhart’s law and real reform will remain impossible.

Pay attention to how the politicos and the media are churning news, almost non-stop, about how much the reform will cost. Will it be $1 trillion, $1.6 trillion or $3.7 trillion? Ask the average person and they’ll almost certainly look at you with eyes filled with fear and guilt, because everybody knows something must be done but frankly, the more we hear about it the more we experience that it’s just too overwhelming.  We have been spoon fed sophisticated lies for too long. Because we have been used as the proxy source of income for all the participants of Opaque, Inc we have never been told:

• what is the real cost of care for each one of us and,
• how we have been brainwashed to believe that so called unlimited medical choices always result in better outcome.

Attacked by soundbites that include one of the huge numbers, we become paralyzed and unable to start questioning any of the statements made by each of the defenders of the established order, as well all the statements made by politicians who are almost always motivated by undeclared biases.

But when the dust settles, we will be left with one simple question. Are we getting better care than before? My theory is that you cannot reform the health care system as long as you fixate on the system. It is too broken and too dysfunctional for multiple reasons as noted by countless experts. But almost none of these experts live and breathe what the people in this blog are experiencing daily.

Health care is not about money, it is about care. It is not about RBRVS, it is about helping the patients having to make complex decisions about pros and cons of various treatment options. It is not about private insurance vs public plan, it should be about health and wellness. It is not about unnecessary procedures, it is about ending the paternalistic model of medicine. Truly empower the patients and they’ll be able to see through many of the dysfunctions and will force changes faster than any mandated reform.

A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, you will have quick and easy (and free) access to your health data?

Ummm, not necessarily.

It may seem like a no-brainer, but we need to make sure President Obama knows that we – as patients, future patients, caregivers, citizens, and taxpayers – really care about having access to our health information. On Wednesday, July 1, 2009, Obama will be holding an online town hall meeting on health care reform to answer some common questions. People can submit questions via Facebook, YouTube, and Twitter (twitter hashtag: #WHHCQ)

President Obama will answer common questions. If enough of us ask, maybe we will get a verbal commitment from Obama to support our health data rights.

Here are a couple of twitter examples:

Obama, will #hcreform support my right to access and use #myhealthdata ? #WHHCQ

Hi Prez Obama! Will #hcreform support humans’ access to their own health data, kinda like how they access their pet’s data? #WHHCQ

It was a provocative talk, because although “everyone knows” the Obama administration has mastered social media, there’s a real question of whether we out here actually use those blogs. And it had never even occurred to me to go there – I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about conversations, not one-way publishing or one-way reading. I commented that the thing about the administration isn’t just that they publish, it’s that they seem to listen.

Anyway, when Aliya published another piece today, Administration urged to engage public on e-health records, I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:

In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in. The core problem here is that there is no political power center for regular people to glom on to health care reform.”

(Emphasis added.)

Think about that: the only people who will live or die, depending on how reform goes, have no power center in Washington.

It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades!

Craig’s point is “The most visible and active ‘stakeholders’ in discussions about HIT so far have been … commercially self-interested players who may not [or, to be fair, may] have patient rights … top-of-mind.”

As I often say, I have nothing against business; I’m in business. But I assert that something is terribly broken if we – the ones who stand to live or die depending on this issue – have no power center to “glom on to.”

Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. Where the hell is the voice of the patient?