Well, wouldn’t you know it, life has provided me with a case study – myself.

Last week I learned I have a basal cell carcinoma, the least threatening kind of skin cancer. On my personal site I wrote about it, and said my approach would include …

• Connect with a patient community (skin cancer patients), if I can find one…. [Update: I've already had people submit four communities there]
• Learn what I can about the disease: what is basal-cell carcinoma, anyway? …
• Assess my treatment options. … what are my options for different providers?
  • I have $10,000 deductible health insurance, so this will come out of my own pocket, and you can bet I’ll be asking around: “Hey doc! What’s my cost going to be? What-all will I be billed for, line by line? And what’s your outcomes data? Thanks! :-)”
  • And yes, I will negotiate – like many Americans today, I pretty much have to. “Can you do any better on the price?” I won’t choose based on the cheapest bid (that can be suicidal), but price will definitely be a factor.
  • “Bidders,” note: I’m willing to travel if I find a great clinic at a great price. If I can save $3,000 with $1,000 of travel costs, you bet I will! This is the glory of consumer mobility: as we fall out of the insurance system, we can go “out of network” as much as we want, because we’re on our own. At last.

Then, Saturday morning I realized I want to do the same thing businesses do (including hospitals) when they want to buy something: issue a Request For Proposal (RFP).

With an RFP, the buyer (a company, or me in this case) doesn’t know from whom they’ll buy, but there may be differences that matter a lot. So they write a document that says what’s important to them and circulate it, hoping to find a really good fit for their needs.

A second post announcing my RFP, and linking to it in Google Docs, is here.

I must say I’m surprised at some of the reaction – a couple of people have referred to it as a “reverse auction,” which is a method purchasing agents use to get the lowest price. Price is important to me, but as it says above, I am not lookin’ for the low-price bidder!  I’m looking for the care I want. 

Please, before you comment on this idea, please look at what I wrote – both my rationale in the first post, and the RFP itself. Thanks!

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

• This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

• This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

“I don’t know, but I can try to find out” is the default setting for people with health questions.

• 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.

“I know, and I want to share my knowledge” is the leading edge of health care.

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare.

As always, I would love to hear from people about what’s missing or what they wish we’d study. I welcome comments (below), tweets (@SusannahFox), and emails (sfox at pewinternet dot org).

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

I’ll write more about it but for now I want to just get this started, because I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

• Top level hashtag #MLhw12 - 
• web page here
• feed & archive here
• participate live on Tweetchat here

• Project 1 – pain management including skin conductance and data-reporting pillbox (#MLpain)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 2 – asthma management with toy-like spirometer (#MLasthma)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 3 – cardiac rehab with a Microsoft Kinect and pulse oximeter (#MLcardiac)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 4 – Integrating MOTOACTV Fitness Tracker w Hypertension and Diabetes Management – with a hacked insulin pen (#MLdiab)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 5 – humanizing mobile health apps by tying people’s life goals to their medical metrics (#MLlifegoals).
  I especially love this one – I tweeted from the project’s description: “the problem is [most apps] focus on goals that lack true meaning to the user … apps focus on heart rate, when pt wants 2b able to play w/her grandkids for 5 min”
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 6 – management of post-op needs including a virtual pet that shows how well the child is doing (#MLpostop)
• description here
• feed & archive here
• participate live on Tweetchat here

What’s conspicuously different about this event compared to any other I’ve seen:

In this room, if what needs to get done isn’t getting done, it’s viewed as a system failure, not a “patient compliance” problem. These people are striving to make everything work better, in our hands.

After 150 events in two years (medical conferences, tech events, policy meetings), I’ve concluded that medicine’s single most important dysfunction is the idea that useful wisdom comes only from biology (or other medical innovations), and it’s up to us to use whatever they danged well give us, containing that received wisdom.

So when patients don’t do what they’re told, it’s a “compliance” problem – and people in healthcare bitch about how irresponsible we are. Even the October Health Leaders magazine had this near the start – in its “Patient Engagement” issue!

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations.

Meh! How about you guys get your act together and give us methods that work for us? 

I mean, seriously: in what other industry can they respond to “This is hard to use” and “I don’t like doing this” by saying “You’re just not good enough for our wonderful inventions”?

I used to work in software companies that tried that approach. They went out of business when innovators came along who understood that easy to use gets done better, and people like it more.

A great example is GlowCaps – a pill bottle cap that glows, beeps, or texts you when it’s time to take your pills. (Check out the “adherence” results from a clinical trial – nearly perfect! No change in patient “morality” – just a better freakin’ tool for us to use.)  (David Rose, formerly of that company (now sold), is in this event.)

Here’s to the people working on these challenges. If you’re a Twitter fiend, follow those hashtags and let the innovators know what you like.

p.s. Anyone who wants to complain about patient “compliance,” please remember that the shoe’s on the other foot with clinician “quality”: hospital workers only wash hands per protocol about half the time, physicians prescribe the standard of care only half the time. The result, as Susannah Fox blogged about Peter Margolis, is that “.5 x .5 = .25″ – the shared unworkability of everything means clinicians do what they’re told half the time, and patients do too, so healthcare on balance operates at 25% efficiency.

And we grouse about rising costs and fail fail fail.

Here’s to the geeks who understand what works.

My personal favorites among several quotable lines in this article:

“Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our ‘product.’ In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.”

and

“Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients.”

Happy New Year, dear readers! May 2012 bring us closer to attaining patient-centered care.

First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post:

• “Look at your medical record. … As health information exchanges, and collaborative networks enable the sharing of information – – – that can work both to your benefit, as well as  amplify the risk of harm.   Bad information in… bad information out.”
• “when your physician or healthcare provider is discussing their thoughts on your diagnosis, and a possible treatment plan, it is extremely important that you feel comfortable in questioning either the diagnosis or the treatment plan and asking whether other options or possible diagnoses are possible“
• “Although many patients do in fact seek second or third opinions from a specialist, they rarely seek second opinions, if ever, on diagnostic studies. …
• The very same holds true for pathology specimens. There are pathologists who are highly sub specialized in certain areas and thus are far better qualified to determine  whether or not a tumor they’re looking at is malignant, benign, and what subtype of tumor it might be – – – which could make the world of difference when determining what treatments are available.”

There’s more – hm, should we have a quiz on Friday??

The other was from Amy Romano (@MidwifeAmy) of Childbirth Connection, who’s appeared many times here: How to Get Good Maternity Care, on the Lamaze International Science & Sensibility blog. It’s got multiple resources – here’s one, a slide show of their ten pointers:

Also available on the post is a PDF of the tips and a short video, Childbirth with a Heart, that makes a great case in just 2:32 for being actively engaged in all aspects of birth – not just the naming.

Thanks to both of these professionals – a physician and a midwife – for sharing these empowering and enabling posts. Each supports patients being active, responsible partners in participatory medicine.

I hope to absorb it in the next day or two, and I invite people who know this history to do the same. It’s deep, and it’s connected to our roots here: when I went googling for the photo at left I discovered that our “Doc Tom”‘s Ferguson Report gave Weed an Outstanding Achievement Award.   In 1999.  To wit:

“Dr. Larry Weed is a pioneering visionary of Information Age health care. He deserves a Nobel Prize in Medicine–maybe two. After reinventing the patient medical record as the Problem-Oriented Medical Record and developing one of the first systems for computer-based patient records from 1956-1982, he set out to develop a computer-based tool, the problem-knowledge coupler, to provide just-in-time computer support to the provider and the patient as they work through the process of diagnosing and treating a n ew medical problem. His vision of a coherent health care system based on a new generation of computer tools points the way toward the next generation of medical thinking.”

In this new interview, 12 years farther down the road, computers are immensely more powerful than what he had then, and he has a decade more experience working with knowledge couplers. What has he seen, and what does he see looking forward? Wow.

(The other awardee in that Ferguson Report is none other than ACOR founder and SPM co-founder Gilles Frydman. Time capsule!)

A taste of the interview:

The true depth of the knowledge problem in medicine occurred to me when I found myself doing basic research in biochemistry at a university medical school.  As a scientist in the laboratory I was dealing with one problem at a time, making time and tasks the variable and achievement the constant. … I was asked to teach clinical medicine on the wards a couple months a year. It was at this point that the true nature of our predicament dawned on me. …

The multiplicity of problems the physician must deal with every day constitutes a principal distinguishing feature between a physician’s activities and those of many other scientists.

These realizations led me to develop the POMR [problem oriented medical record] so that medical students and practitioners could function in a structured, rigorous way more like that of workers in the scientific community. The POMR cannot change the multiplicity of problems that physicians face. But the POMR enables a highly organized approach to that complexity.

I cheated and skipped to the end of the piece, for his “look ahead,” and found these:

I have heard you eloquently make the case that the present practice of medicine is flawed in that it primarily depends on the physician’s limited memory and processing capacity when dealing with complex patient issues. What is your solution?

LW: I have spent more than 30 years developing and implementing what I have called “knowledge couplers.” Medical knowledge is used to select and analyze patient data, coupling the data in a matrix fashion with medical knowledge developed through research. The output of this coupling process is an organized display of options and evidence. …

… any automation that reliably couples patient data with the world’s medical research will be dramatically better than the unaided human mind.

The “knowledge couplers” are to be used, he says, in conjunction with the POMR and reform of medical education and credentialing. (I’d be laughed out of the discussion circuit if I proposed that – will Dr. Weed be marginalized for it?)

And this:

You have expressed concerns with both the type of individual accepted in medical school as well as how medical students are taught in their first two years. Could you tell our readers what you see as the issues and the implications to preparing these students to practice medicine?

LW: Today, students are recruited on the basis of how well they memorize and regurgitate facts. In the future because knowledge will be in information technology tools instead of in heads, students should be trained in the reliability of performance of given tasks that will be part of a complete medical care system. Students should be selected for their hands-on skills and interpersonal skills and not on the basis of their memory and regurgitation of facts.

And:

Your writings make a very compelling argument for these changes in medical education. Yet, such changes are largely absent from health reform debates. Why do you think there has been such a complete lack of a dialogue on the subject? If educators disagree, why aren’t they saying so?

LW: The system that I just described is very threatening to many educators who are now in the business of moving knowledge through heads instead of using information technology such as knowledge coupling tools. They are judging students on how much they know instead of how well they perform in a well-defined and audited system of care. …

Enough – if you’re interested in this examination of the very nature of a doctor’s work, please read the whole article, and we’ll discuss.

Hacía tiempo que teníamos en mente la posibilidad de llevar a cabo la traducción del Libro Blanco de los e-Pacientes al Español, ya que con más de 420 millones de hispanoparlantes en todo el planeta, nuestro idioma es ya la segunda lengua más hablada en el mundo, y la tercera más usada en Internet. De hecho hay casi la misma cantidad de hispanoparlantes en EEUU que en España.

Así fue como a raíz de la presentación de Dave deBronkart en las jornadas celebradas en Bilbao (España) Pacientes y profesionales en la Web 2.0, durante el pasado mes de julio de 2011, esta idea tomó fuerza. De este modo, un grupo de 7 españoles con diferentes profesiones y de distintas partes del país, pero con el interés común de querer fomentar y dar a conocer al mayor número de personas la revolución de los e-pacientes, nos organizamos a través de Twitter y, después de unos meses de trabajo en equipo, la versión Española del Libro Blanco de los e-Pacientes es ahora una realidad.

El movimiento de los e-Pacientes surgido en EEUU se ha convertido en un fenómeno en claro crecimiento gracias a la Web 2.0. Uno de los intereses más universales en Internet es la Salud, y por tanto, cualquier persona con acceso a Internet es potencialmente un e-Paciente independientemente de su nacionalidad. Buscar información sanitaria en Internet no nos hace e-Pacientes. Es un síntoma de un cambio más radical, hacia los ciudadanos más capacitados-empoderados y comprometidos con su salud. Si tomamos decisiones informadas al comprar una casa, ¿por qué no sobre nuestra salud? Los e-Pacientes están llamados a tomar decisiones sobre su salud en una estrecha colaboración con los profesionales sanitarios. Internet es sólo una herramienta más, una puerta de enlace para encontrar información y socializar. Los verdaderos e-Pacientes no se creen todo lo que ven en Internet, sino que adquieren un conjunto de habilidades para encontrar información de calidad, aprenden a separar el grano de la paja.

Y dentro de este contexto, la comunidad hispana en torno a la salud 2.0 está en plena ebullición. Es imposible mencionar todas las personas involucradas en la temática, desde las trincheras de la atención primaria a investigadores en centros de I+D. La Web 2.0 ya se está utilizando en beneficio de pacientes y los profesionales hispano hablantes. Por ejemplo, hay casos de blogs de pacientes en español con más de 600.000 seguidores (por ejemplo, Diario de Pedro), hay comunidades de pacientes con miles de miembros (p.e. EsTuDiabetes) y también hay comunidades donde pacientes y profesionales trabajan conjuntamente forumclinic. Los hospitales españoles también están comenzando a ponerse al día en el uso del social media (observatics). Todos ellos trabajando-soñando con mejorar nuestra salud y sistemas sanitarios usando la Web 2.0. Junto a las innumerables iniciativas, también hay un intenso debate sobre el impacto de la Web 2.0 en la atención sanitaria, tales como los debates twitter semanales #hcsmeuES desde España y #hcsmla desde América Latina. Conferencias y desconferencias se organizan cada vez con una mayor frecuencia. La comunidad ha creado también el directorio de recursos Españoles sobre la Salud 2.0 wikisanidad. También hemos de destacar el libro sobre e-Pacientes y Redes Sociales que en pocos días consiguió miles de descargas (disponible en: www.salud20.es). Otro evento de especial interés fue la realización de Manifiesto de Abla (www.salud20.es/manifiesto) que propone una serie de principios para conseguir una sanidad más participativa con el uso de Internet, un manifiesto que fue redactado por más de 70 autores de forma colaborativa usando herramientas como Google Docs y Twitter.

Pero todo esto no acaba aquí, hay muchos proyectos e ideas brotando de la comunidad hispana sobre la Salud 2.0. Pertenecemos a una comunidad global de personas que creen que la Web 2.0 puede mejorar nuestros sistemas sanitarios. Debemos unir esfuerzos con nuestros compañeros de viaje en los EEUU y del resto del mundo, pues hablando se entiende la gente y de esa manera aprenderemos los unos de los otros.

Elia Gabarron (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editores de la versión española Libro Blanco de los e-Pacientes

To read this post in Spanish, click here.

From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández Luque:

For some time we’ve had in mind the possibility of carrying out the translation of the e-Patient White Paper into Spanish, because with more than 420 million of Spanish speakers worldwide, our language is now the second most spoken language in the world, and the third most widely used in Internet. In fact, there are almost as many Spanish speakers in the US as in Spain.

After Dave deBronkart’s presentation at a conference held in Bilbao (Spain) last July, Patients and professionals in Web 2.0, this idea gained momentum. A group of seven Spanish people with different professions and from different areas of the country, but with the common interest of encouraging and showing as many people as possible the e-patient revolution, organized ourselves through Twitter. After a few months’ teamwork, the Spanish version of the e-Patient White Paper is now a reality.

The e-patient movement that emerged in the U.S. has clearly become a phenomenon thanks to the growth of Web 2.0. One of the most universal interests on the Internet is health, and therefore, anyone with Internet access is potentially an e-patient regardless of their nationality. To find health information on the Internet does not make us e-patients. It is a symptom of a more radical shift towards more skilled citizens, empowered and committed with their health. If we seek information to decide when we’re buying a home, why not with our health? e-Patients are called to make decisions about their health in close collaboration with health professionals. The internet is just another tool, a gateway to find information and socialize. Real e-Patients don’t believe everything they find online, they develop a set of skills to find quality information; they learn how to separate the sheep from the goats.

Within this context, the Hispanic community about health 2.0 is in full swing. It is impossible to list everyone involved in the issue, from the trenches of primary care to R&D researchers. Web 2.0 is already being used for the benefit of both patients and Spanish-speaking professionals. For example, there are Spanish patient blogs with over 600,000 followers (eg, Diario de Pedro), there are communities with thousands of members (eg EsTuDiabetes), and there are also communities where patients and professionals work together like forumclinic. Spanish hospitals are also beginning to get up to date with the use of social media (observatics). All of them, working-dreaming about improving our health and health systems using Web 2.0.

Along with the many initiatives, there is also an intense debate about the impact of Web 2.0 in healthcare, debates such as the weekly twitter chat #hcsmeuES from Spain and #hcsmla from Latin America. Conferences and un-conferences are organized with increasing frequency. The community has also created a directory of resources for Spanish Health 2.0, wikisanidad. In addition, we must highlight the book about e-Patients and Social Networks that has been downloaded thousands of times in a few days (available at www.salud20.es). Another very good example of collaboration towards participatory medicine and Web 2.0 is the Manifest of Abla, www.salud20.es/manifiesto, written collaboratively by more than 70 authors using tools such as Google Docs and Twitter.

But it doesn’t end here. There are many projects and ideas flowing from the Hispanic community about Health 2.0. We belong to a global community of people who believe that Web 2.0 can improve our health systems. We must join hands with our fellow travelers from the U.S. and from around the world, because the way to work things out is by talking.

Elia Gabarrón (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editors of the e-Patient White Paper Spanish version

Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:

“Should I refuse my dinner because I don’t understand the digestive system?”

It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”

The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order.

In the 1900s brutish early treatments (no more sophisticated than leeching) became more scientific. Inevitably some researchers then urged that we not try new treatments on humans until we know exactly what cancer is – basically, don’t move forward until we’ve got it figured out – with confidence. But meanwhile, people were dying.

As I wrote three years ago on my personal blog:

On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?

In my own case, my oncologist says there’s a 50% chance my disease will return, and there’s no way to predict which one I’ll be.

So we live, with uncertainty.

Participatory patients and physicians alike should accept that medicine is uncertain. Jerome Groopman MD’s excellent How Doctors Think even says 10-15% of all diagnoses turn out to be wrong, on autopsy. Fittingly, his epilogue it written to the (engaged) patient – how to discuss things anew with your doctor when the treatment isn’t working.

Science keeps pushing toward certainty, and disease doesn’t wait. Perhaps if we acknowledged the difficulty of diagnosis, and if more physicians were allowed and willing in our culture to express doubt, patient questions would be welcome and we could work more collaboratively.

By the way, the Wikipedia article on Heaviside has a different version of the quote: “I do not refuse my dinner simply because I do not understand the process of digestion.” Which to believe? Googling says the Wikipedia version is on 1,310 web pages and the book’s version is only on three.

What do you do in the face of uncertainty? How many sources do you check before you decide to move forward?

Forgive me for mixing my metaphors (or whatever it is I just did), but even though there are just a couple dozen words of regulations at issue here, this is a big deal.

When HIPAA established a federal right for each individual to obtain a copy of his or her health records, in paper or electronic format, there were a couple of types of records called out as specifically exempt from this general rule of data liberation, in the HIPAA Privacy Rule, 45 CFR § 164.524(a)(1): psychotherapy notes, information compiled for use in an administrative or court proceeding, and lab results from what is known as a CLIA lab or a CLIA-exempt lab (including  “reference labs,” as in your specimens get referred there by the lab that collects them, or freestanding labs that a patient may be referred to for a test; these are not the labs that are in-house at many doctors’ offices, hospitals and other health care facilities — the in-house labs are part of the “parent” provider organization and their results are part of the parents’ health records already subject to HIPAA).

(“CLIA” stands for the Clinical Laboratory Improvement Amendments of 1988, which established quality standards for certain laboratory testing.)

This carveout of lab results from patient-accessible records has long been a thorn in the side of the e-patient.  This month, the federales announced that they would step forward as Androcles to the e-patient lion (to jumble a reference or two), and pull out the thorn, by proposing to amend both the CLIA regs and the HIPAA regs.  The HIPAA regs include the exception described above: all records must be made accessible upon request except labs and a couple others.  The lab results exception will be deleted from the HIPAA regs if the change is finalized.  The CLIA regs prohibit lab delivery of results directly to patients.  The proposed amendment says that the labs “may” release the results directly to patients.  The net effect is that patients will have the right to request the results, and since labs will be permitted to release them, they will have to do so.

As some readers will recall, HIPAA regs were subjected to a state-by-state “pre-emption analysis” when they came out.  (Generally speaking, Federal law “pre-empts” state law unless state law is more protective of an individual’s rights or health.)  The feds note:

A number of States [most, actually] have laws that prohibit a laboratory from releasing a test report directly to the patient or that prohibit the release without the ordering provider’s consent. If adopted, the proposed changes to § 164.524 [of the HIPAA regs] would preempt any contrary State laws that prohibit the HIPAA-covered laboratory from directly providing access to the individual.

Thus, labs in most states have some work to do in figuring out how they will actually release results directly to patients once the regs are finalized and effective (which could be about a year, folks, so sit tight).

Here’s where it gets fun, folks:

While individuals can obtain test results through the ordering provider, we believe that the advent of certain health reform concepts (for example, individualized medicine and an individual’s active involvement in his or her own health care) would be best served by revisiting the CLIA limitations on the disclosure of laboratory test results.

CMS goes on to say that the HIT Policy Committee  at ONC, established by the HITECH Act, says that “CLIA regulations are perceived by some stakeholders as imposing barriers to the exchange of health information.  These stakeholders . . .  believe that the individual’s access to his or her own records is impeded, preventing patients from a more active role in their personal health care decisions ” … so we’re going to change them.  [Paraphrase and emphasis mine.]

Let me restate this, folks: the regs are being changed to give greater patient access to health data not because of a recent change in the law, but becuase patients and patient advocates spoke up, and the HIT Policy Committee got the message.

I had the opportunity to hear Dr. Farzad Mostashari (National Coordinator for Health IT), Lygeia Ricciardi (Senior Policy Advisor for Consumer eHealth), and Jodi Daniel (Director, Office of Policy & Planning) speak at an ONC town meeting at this week’s Health 2.0 conference and they are nothing if not passionate about promoting patient access to health data. (Please take a look at my mini video interviews with Dr. Mostashari and Ms. Ricciardi, if you need any confirmation.)

This change may improve patient access to lab results, but only if the right to obtain the results is ushered in together with an education campaign that alerts patients to this new right, and if the results are presented in a manner that includes some minimal level of interpretation (and I recognize that too much interpretation will cross the line into the communication that needs to take place between the patient and his or her clinician).  On the question of how lab results should be presented to patients, at Health 2.0, Thomas Goetz, of Wired magazine, presented a  patient-friendly lab report tool, to be rolled out soon by his company, 1 + 1 Labs.  Other approaches, of course, are possible, since numerous institutions already provide this data directly to patients.

A certain percentage of lab results never make their way to the patient — and the patient education piece of the rollout could result in that percentage being reduced, or even eliminated.

There is opposition to the proposed rule by some providers, who express a concern that a patient who receives lab results directly may well (a) misintepret a value that is “normal” for the population at large but that might not be “normal” for her and/or (b) fail to communicate with the clinician who ordered the test.  In our fee-for-service world, some cynics may say that some clinicians are being inappropriately incentivized to seek another billable patient encounter for discussion of results.  In the future of bundled, episodic, prospective payment systems, this would not be a concern.  In fact, since we will be asking the entire health care system to be doing more with less as a result of the nation’s fiscal and political environments, frictionless sharing of information should be welcomed by providers.  Providers will continue to receive lab results, and will continue to be expected to discuss them with their patients.

Comments on the draft rule are invited, and the Society for Participatory Medicine will be supporting this change.

One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:

It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.

So as you say, the power of patient groups works!

Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. The Wall Street Journal has a big megaphone and, in this article, used it to spread the word about this one patient network. Will it spark more coverage of other patient networks? Will it spark ideas for other clinicians and other patients who want to tap into the same zeitgeist of shared learning? Those are the questions that came to my mind as I read the comments and thought about the roadblocks and opportunities which face participatory medicine.

I was also struck by the following sentence, which began a lengthy comment about the need for universal health care:

I find it a disgrace that in today’s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses.

A disgrace? That is not a word that I would ever use to describe people with expertise who work together on a shared problem. But let’s hear more from this commenter:

There should be a protocol within the doctor’s practice, to assure these women are given what they need. They should not have to resort to online articles for their information nor should they be in the position of having to “band together to spur medical research.” Their job should be to get well. Their doctors and elected officials should be doing the heavy lifting.

As I stated at the top, I welcome the chance to read people’s unvarnished comments since I always learn something. Here, I’m learning about how people outside the world of patient networks might view this story and how far we need to go to communicate the reality of the situation. I don’t disagree that in a perfect world, there would be a “protocol” to get people the care they need. But sadly that is not always the case. People often do need to study up, talk with fellow patients and caregivers, search online, and otherwise do the “heavy lifting” involved in health care decision-making. In fact, I worry about the people who do not have access to high-quality information they can understand. For starters, please see: Internet access drives information access.

I’d love to hear what other people think about the WSJ article and comments. I’d also love to hear about other examples of pop-up comment threads related to peer-to-peer health care, participatory medicine, etc. What are you seeing? What are you learning?

Please, um, leave a comment!

My friend switched to another doctor who’s much more interested in partnering actively with patients – will discuss anything and even provided his cell number!

(My oral surgeon even gave me his home number. And he answers it.)

My friend said, “I’ve been thinking about e-patients a lot lately” as this unfolded. This is his/her first episode where the e-patient awakening (from past conversations) led to taking action in an empowered, engaged way.

I sent my friend a somewhat similar story from this blog, April 2009, about a longtime friend of mine, Elyse Chapman. It’s a classic. Please read it. This newly bereaved woman faced an apparent emergency, was absolutely respectful of her physicians and willing to do whatever it took, and then simply did what she could to explore her options. The outcome is inspiring.

Please read Elyse’s story – and the comment stream. It’s fascinating to look back and compare people’s views today (around here anyway) with how our community felt 28 months ago.

The FDA’s Risk Communication Advisory Committee has published a PDF book called  ”Communicating Risks and Benefits: An Evidence-Based User’s Guide.” It’s meant to help healthcare practitioners and researchers communicate their work with patients, care givers and the public at large. It’s a free download here (3MB) on the FDA’s website.

The 242-page book covers topics like goals of risk communication, evaluation, language to be used in the communication etc. Every chapter covers a summary of a chosen topic, drawn from multiple research papers on the topic, and includes additional resources for further research.

Some topics of interest to e-patients:

• The chapter about the language to be used in patient communications, written by Musa Mayer, the well-known breast cancer survivor and patient advocate.
• Chapter 17 is about Shared Decision Making, which we talk about a lot on this blog and on the SPM members listserv.
• Chapter 18 on health care news coverage is by Gary Schwitzer of Health News Review. He talks about how medical journalists tend to exaggerate the benefits and minimize potential harms.

This is a must read for all doctors and medical researchers. Please share with your friends and colleagues.

Participatory medicine depends on the availability of health information to all members of a care team. Communication – the exchange of thoughts, opinions, or information by speech, writing, video or signs including body language – continues to be a hotly debated, difficult to execute practice in healthcare. In this post I present some thoughts on the subject, and propose several concrete ways providers and e-patients can develop participatory methods.

There have been multiple studies over the years that reinforce the correlation between good communication among patients and providers and improved health outcomes. For example, Effective Physician-Patient Communication and Health Outcomes, a review of 21 studies revealed that 16 of the studies reported positive results, four reported negative (i.e., non-significant) results, and one was inconclusive. Among the key conclusions was that the quality of communication both in the history-taking segment of the visit and during discussion of the management plan was found to influence patient health outcomes.*

In fact, I contend that health information gathered from patient interviews, face-to-face exams and other communication between providers and patients, such as email or e-visits play a key role in treatment decisions, ongoing health monitoring, adherence and results.

Low expectations regarding teamwork and communication have for many years encouraged a culture where teamwork and collaboration are difficult to achieve. It’s ironic that ever since the publication in 2000, of the original IOM report, To Err Is Human, healthcare organizations have worked hard to improve patient systems and patient safety but most have failed to address poor communication habits that would enhance information sharing. It is clear that when health care professionals do not know what their colleagues are doing to manage a patient they are seeing, and when patients do not have the opportunity to share the information held by their providers, all the patient safety rules in the world cannot compensate.

For decades there has been a lot of talk about the need for training medical students in communication skills. It was not until June, 2004, that a communication skills component was added to the U.S. Medical Licensing Exam to test medical students on their ability to gather information from patients, perform a physical examination and communicate their findings to patients and colleagues.

The Agency for Healthcare Research and Quality (AHRQ) has developed CAHPS www.cahps.ahrq.gov (Consumer Assessment of Healthcare Providers and Systems), a public-private initiative to develop standardized surveys of patients’ experiences with ambulatory and facility-level care. CAHPS also publishes guidelines for patients to help them understand the important communication skills they need to improve their ability to share information with providers. Unfortunately not many patients know about these guidelines or access them. These guidelines include four areas:

1. Record Sharing- patient access to the electronic health record
2. Patient Question Lists – what to ask the doctor at a typical visit
3. Feed Forward – a questionnaire filled out by the patient prior to receiving care
4. Coached Care- teaching patients how to ask the right questions and be more assertive during a face-to –face visit with their physician

Health care consumers are by definition able to judge whether their clinicians communicate with them effectively. Many healthcare organizations including hospitals and health centers now strive to enforce good communication habits among their physicians and encourage their patients to participate in their care and collaborate with their providers. Many payers also work with enrollees to help them understand communication skills needed in their increased participatory role.

As e-Patients become more invested in the partnership model they may need to work at communicating with their providers. It is a two-way path where several things must happen:

1. Both patients and providers must improve their willingness and ability to share information.
2. For providers it begins with medical school training where a required course in communication skills should be mandatory. Additional communication skills training should be included in residency programs.
3. Providers also need to be more diligent about being absolutely sure they have full information on a patient at the point of care.
4.  Patients need guidelines regarding when and how to ask questions, be aggressive and speak up when they do not understand an explanation. They need to understand that there is no question too trivial to ask their provider when they are confused or unclear about a condition, treatment or medication.
5. Payers need to initiate and support programs that help providers and patients communicate more effectively so that some of the inefficiency and errors in medical care will be eliminated, saving time and money.

There is no industry where communication is not an essential component to keep things running smoothly and efficiently. In healthcare, however, communication can save lives and that is beyond essential.

* M A Stewart, Thames Valley Family Practice Research Unit, Centre for Studies in Family Medicine, University of Western Ontario, London, CMAJ-JAMC listed in Pub Med, (CMAJ 1995 May 1: 153(9) 1423-1433 PMCID PMC 1337906). www.ncbi.nih.gov/pmc/articles/PMc1337906/

See also Nancy’s November 2008 post here about a recent hospitalization.

One is Sue Woods MD MPH, a potent and high-energy advocate for patient engagement and full access to medical records, at the Veterans Administration and OHSU (Oregon Health Sciences University). The VA is one of the largest health systems with a personal health record, and they’re improving it every year. Sue’s blog is, fittingly, Shared Health Data. When I saw her post this weekend, I thought “This is how to introduce her. This exemplifies what she’s about.” See her bio on her blog.

Patient-Physician Communication: There’s So Much More To Do

A recent Commentary in JAMA, Patient-Physican Communication: It’s About Time, by Wendy Levinson, MD, and Philip A. Pizzo, MD, is a critical call for physicians to be taught how to talk to and engage patients. It may seem silly that promonent academic leaders need to say this even now, but it still rings true. In our current fragmented care, where provider time is at an all time low, it’s ever more important.

Just last week I worked with a resident who was clearly irritated by a patient. “He’s basically a healthy guy” he said, “but he brings in pharmaceutical ads, and he underlines all these words…..and it takes so long to go over everything and some of these aren’t that important.” Not lost on the huge teaching moment here, I thought carefully about how to persuade the resident that this engaged, activated patient is the goal in healthcare, and that listening to the patient’s concerns would not only help the patient-physician relationship, it would improve patient satisfaction and lead to better outcomes. I tried not to dwell on the lost opportunity to model the ideal conversation, or videotape resident encounters so as to offer feedback. So I talked about how important it is for providers to encourage patients to ask lots of questions, and said patients searching online (or offline) for answers is great, and that it’s OK to just reasure or re-direct. With residents needing “the evidence”, I assured him that research on this was ample.

Back to the JAMA commentary. Wendy Levinson is a favorite role model of mine, a fantastic researcher and leader in medicine. Years ago I had the privilege of practicing general internal medicine alongside her at Legacy Health Systems in Portland, Oregon. A key influence in my decision to head to Seattle for a research fellowship, Wendy left Legacy (Portland’s loss) and is now Chief of Medicine at the University of Toronto. She is a force in medical education, driving for better physician-patient communication. Her research, The Relationship With Malpractice Claims Among Primary Care Physicians and Surgeons, found fewer malpractice claims among primary care doctors who encouraged patients to talk, had more humor and spent a bit more time in visits. Her work is legendary, quoted by Malcom Gladwell in his book “Blink”.

Wendy’s Commentary is so important, I’ve excerpted some here:

Effective communication with patients takes time. ‘Active listening,” a core skill in effective communication, requires that physicians listen deeply to patients telling the stories of their illness and how it has affected them. Most physicians in clinical practice, as well as faculty members in academic medical centers, express a desire to spend more time with patients, but acknowledge that they are under intense pressure to be productive, measured in numbers of patients observed in units of time. Perverse incentives have contributed to physicians developing “efficient styles” that squeeze out time to listen because it is perceived to take too much time. Frequent handoffs in transitions of care, increasingly common today, make time to connect with patients even more challenging. Second, medical schools and residency programs provide relatively little education about effective communication skills compared with the educational time devoted to teaching science and technology. Furthermore, medical students and residents are rarely observed during their interactions with patients or given specific feedback to improve their communication.

The authors call on policy makers and accrediting bodies to remedy the situation. Here’s a few of their ideas -
- Reward faculty for patient-centered care innovations and science
- Have transparent peer and patient communication skill reporting
- Use validated measures on patient satisfaction
- Increase trainee communication standards, require competence
- Teach advanced communication skills
- Celebrate excellence in communication
- Have reimbursement that incents great communication

This list is critical but insufficient to achieve true Participatory Medicine. There is another key ingredient. Patients, consumers, family members and informal caregivers must be brought into the design of these changes – even (especially) in academic medicine. We don’t want just patient-centered care, we want patient-centered design. Organizations such as the Society for Participatory Medicine should position themselves to help academics and healthcare build a better design…and make sure we get to the right place – finally.

You, the patient, are a vital component of medical decision making. Believe it or not, it’s worth your effort to find out about your treatment options! This informal FlipCam vignette models a physician encouraging the patient to ask: “Don’t you want to know??” Cast: Pat Mastors as the empowering physician, and e-Patient Dave pretending to be passive. :-)

Watch:

At last December’s IHI Forum (Institute for Healthcare Improvement), through the generous support of the Cautious Patient Foundation, fifty patient advocates were brought together to participate in every session.  Numerous SPM members were there – Regina Holliday, Trisha Torrey, and others I apologize for not remembering right now.

One was Pat Mastors, a former New England broadcast professional and creator of the Patient Pod, which she created after the incredibly difficult experience (all too common) of watching her father die from a hospital-acquired infection. (Story) Like so many advocates, Pat has responded to her tragedy by applying her professional skills to improving healthcare.

With her TV background she had an idea for a PSA (public service announcement) to encourage people to be engaged in medical decision making – to ask questions. I said “Hey, let’s pull out my FlipCam and do a draft. Maybe somebody will grab it and do a ‘real’ version.” She was hesitant, professional that she is, but I talked her into it. :–)

Immense thanks to Cautious Patient, and to IHI for having the vision to realize that patients should be – must be - engaged in conversations to improve healthcare. Not all events do this – for instance, at the upcoming Medicine 2.0 conference, there’s only a single patient speaking. Patients are the most underutilized resource in healthcare – Let Patients Help!

And, ladies and gents, that starts with you, the patient. Ask your doctor questions – including when you’re presented with just one option, with no discussion of risks and alternatives. Ask.

For more on questions, see Questions Are The Answer, a great website from AHRQ (the Agency for Healthcare Research and Quality), with vignettes like “You ask your waiter about the side dish, but you don’t ask your doctor about side effects. Questions are the answer.” See AHRQ question PSAs here.

For each “dumb thing,” Elizabeth Cohen’s original included why patients should wise up; Woods proposes what she feels is a more empowering version, and advice for docs.Example, for the #2 dumb thing:

• Problem: “You lie.”
• Original comment: “I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know… I won’t judge.”
• Sue’s version: “You have the right to not share things. If you decide to hold back, make sure it’s for a good reason. Ask yourself why you don’t want to share. Are you afraid you’ll be judged? Lectured at? If so, say someting like “I want to tell you something, but I’m not sure how you’ll respond.” That’s a signal for the doc to listen and not react. If they behave badly, vote with your feet.”
• Sue’s note to docs: “It’s your job to make people comfortable so they share their stories. People have a right to not disclose, but if you build trust then sharing happens. Listen and don’t interrupt unless it’s necessary, and make the visit about the patient’s agenda. If you find discrepencies in a patient’s story from one visit to the next, get over it. We tell different stories about ourselves all the time.”

This doesn’t just empower the patient (putting responsibility, knowledge and power where it belongs), it does it in a non-blaming, explanatory way. And it empowers the doc, in the same way: putting power, knowledge and responsibility right where it belongs.

This could be the start of a “How To Be An e-Patient” book. Or, better yet, booklet. Pocket-size. Handy. Concise.

• Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)

Jessie’s talk was so good it had me going nuts on Twitter – I couldn’t keep up with all the “tweet-worthy” things that came out of her mouth.

Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.

For those who don’t know, last fall Jessie underwent surgery for her fourth cancer; she has some experience. The ICSI audience is primarily doctors, nurses, physician practice employees, health plan (insurance) executives, and hospital staff. She spoke to them about the importance of patient engagement (especially the patient’s responsibility), her foundation’s framework for what an engaged patient does, and what the profession must to do make that possible for us.

This is one for the ages.

The Evidence for and Experience of Engaging in Health Care

Jessie Gruman, PhD
Center for Advancing Health

Delivered at the Institute for Clinical Systems Improvement’s Colloquium on
Health Care Transformation: “Thriving in an Era of Health Care Reform: Advancing
Accountability, Affordability and the Patient Experience,” St. Paul, Minnesota,
May 18, 2011

I know there are many demands that compete for your stretched attention, from implementing aspects of health reform to adoption of EHRs, interoperable data systems, staff management, contract negotiations, quality improvement efforts and so much more.

All these affect what you do to and for patients. But what you do with patients is equally important.

I will make the case to you that your patients, your members and their loved ones now face ever more daunting challenges as medicine asks them to take greater responsibility for their care. Attending more closely to these demands will help your patients, your members and their families take on their new responsibilities with greater confidence which will, in turn, benefit you.

Let me first tell you how I became aware of the largely unacknowledged challenge to patients posed by advances in technology: On my 20th birthday, I was diagnosed with cancer and spent considerable time on life support while my doctors tried to halt the cancer’s galloping course through my body. I was devastated. I was just a child. I thought, “I can’t die now – I’m just beginning!”

After I was well enough to go home, I began the daily trek to the hospital for weeks of radiation treatments, followed by two years of debilitating chemotherapy. I was skinny. I was hairless. And I was non‐compliant.

Each time he administered my chemotherapy, my doctor would direct me to take six pills daily at regular intervals for the next two weeks. I didn’t do it.

One day I might take two pills. Or six all at once. Some days I took none.

My doctor warned me to stay home because my immune system was at low ebb and I was at grave risk for infection.

I went out dancing.

I now look back at my behavior in awe: The millions of dollars worth of biomedical research that was distilled into the knowledge and experience and procedures and drugs aimed at a disease that was costing hundreds of thousands of dollars to treat ultimately largely relied on the actions of a weak, skinny, scared adolescent to have its impact. I had to show up. I had to cooperate. I had to take the drugs as scheduled. I had to avoid the risks. I was not a very good patient.

But I was the star of this drama. The central role I had to play in order to achieve the potential benefit of the best available treatment has been brought home to me again and again – through three additional cancer diagnoses, the treatment of a dangerous heart condition and the ongoing management of the conditions and risks that result from that many diagnoses and that much treatment. I’ve learned the importance of my challenging new role.

I am constantly impressed with the tools that are now available to treat diagnoses that – even a decade ago – were death sentences. And I am so very grateful for them.

But what is widely overlooked about these advances is the extent to which their success depends on our participation. We have to show up. We have to do the exercises. We have to take the pills. We have to avoid the risks – or we don’t realize the benefit.

Things have changed substantially since I began my extensive experience as a patient:

• Better surgical techniques mean we come home from the hospital quicker and sicker and have to provide our own care: We manage the symptoms, operate the devices, do the rehabilitation and calibrate the medications.
• Better drugs help many of us to live long and well despite our HIV/AIDS, cancer, diabetes and lupus, for example, but using them correctly requires us to restructure our lives.
• And the gains in knowledge mean more specialists, more diagnostic tests and more sources of care to be coordinated. And who coordinates all these players and services? We do.

It is abundantly clear that medical science has advanced far more quickly than patient performance has.

Too often we still don’t realize our participation is not really a choice. It is not just a nice thing to do if we feel like it today. It is necessary:

We have to participate actively and knowledgeably in our care
if we are to realize its benefits.

I don’t think most health stakeholders fully recognize this: Almost no one has really thought through what it means to have a health care system that relies so heavily on patients and our loved ones to ultimately realize its potential for improved outcomes.

As people on the front lines of delivering and paying for care, you know too well that there are many of us who will never be able to fulfill our end of the deal: We are already too sick or disabled, we are too young, we are frail mentally, our families don’t have the resources and they lack the health literacy and the confidence to take on these highly complex tasks.

But many more of us could do the work if we had specific tools and support designed to help us.

I believe that a major focus of changes in the delivery of health care must be in enabling and facilitating us and our caregivers to competently engage in our care.

Rather than talk about what clinicians or health plans or hospitals should do – or revisit definitions patient‐centered care – I am going to take the form‐follows‐function approach, that is to ask the question we at the Center for Advancing Health asked ourselves a couple years ago:

If, indeed, all the benefit of health care can be muted or wasted by our lack of engagement in our care, what, specifically, does it mean for us to “engage?”

I am going to walk you briefly through a study we conducted to answer this question – to identify the actions people actually have to perform to benefit from their health care.

And so the question: What does it mean to be “engaged” in our health care?

We defined engagement behaviors as “actions individuals must take to obtain the greatest benefit from the health care services available to them.” We are concerned only with behaviors of individuals relative to their health and health care, not actions of professionals or policies of institutions.

Here are the steps we took to assemble the Engagement Behavior Framework:

1. We interviewed hundred of patients and caregivers about their experience with care.
2. We reviewed the relevant academic and gray literatures.
3. We interviewed leaders in health care, research, health policy, and advocacy who had written and spoken about patient engagement.

After a lot of review by outside experts, we finalized a draft of the Engagement Behavior Framework.

We grouped the 43 engagement behaviors we identified into these ten categories:

1. Find Safe, Decent Care
2. Communicate with Health Care Professionals
3. Organize Health Care
4. Pay for Health Care
5. Make Good Treatment Decisions
6. Participate in Treatment
7. Promote Health
8. Get Preventive Health Care
9. Plan for the End of Life
10. Seek Health Knowledge

As you contemplate the fine print, take these observations into account:

First: Most people do not actually do many of these behaviors. Last year we conducted a study in which we looked at 31 major national health surveys supported by the government and foundations and identified the items that asked people about what they did to find and use safe decent health care.

For the vast majority of behaviors on this list, only one third of respondents perform them.

The picture is not pretty.

Second thing to think about: This Engagement Behavior Framework is not an indictment that blames people who do not take these actions. Rather, it is a description of behaviors linked to health outcomes that must be enabled and facilitated in order to ensure that more of us have the choice to perform them.

Third thing to think about: This is a long list. No one has to do all these things all at once. However, everyone has to do most of these things at some point if they are going to benefit from the care available to them. What does this mean for your ailing neighbor? The single mom with four little kids you saw in the supermarket yesterday? Your dad? And what does that mean about how health care should be organized?

And fourth: Most people are mostly healthy most of the time and so aren’t aware of the many new responsibilities that are now ours. Some people, like me, discover the hard way that different diseases and different settings require different things of us that we don’t expect.

Many of us are going to need a lot of help to effectively perform these actions.

All of us need to know that we are expected to do them. What does THAT imply about changes in health care delivery?

Rather than talk in generalities here, I am going to describe two themes we hear about from patients all the time – and give you two examples of how you can respond, how you can act to engage your patients, your health plan members and their families in their care.

First theme:

In our interviews, we repeatedly hear that

• People can’t figure out how to get their test results.
• They are puzzled about whom to call after hours or on weekends.
• They think that because the receptionist uses a computer that they also have an electronic health record that can be automatically electronically transmitted to other clinicians.
• They are baffled about whom they should talk to regarding billing and insurance problems.

Speaking as a savvy and confident patient who is flummoxed by so much of what takes place in health care, I am regularly surprised by how little you know about how little we patients know.

You are immersed in the health culture. But we don’t live in your world. So we have no idea what you are talking about much of the time.

One way to help us feel competent in such unfamiliar environments is to give use some guidance about what this place is and how it works. What are the rules?

So think along these lines:

When you checked in to the hotel last night… or the last time you went to a hotel… and went to your room, what was sitting on the desk? A guide to the hotel. It lists what services are available and when they are available. It describes where the hotel is located relative to the highway and the airport. It contains information about the phone and TV and radio, pool and fitness center, and how to use the wireless connection. And most importantly, it tells you how to contact the people who can help if you need it with reservations, housekeeping, room service, wake‐up calls.

The services this hotel offers are no less complex than the services many of you offer to patients and their families, though the goal is obviously very different. Are patients and families provided with such a guide when they seek care from your medical practice or are admitted to your facility?

And if not – tell me how we’re supposed to know these things? Should we guess? Or perhaps ask the busy nurses or doctors?

A couple years ago, in response to these findings, we developed a model guide for patients and caregivers that identified the basic information people need to interact over time with a given medical practice or setting. The model includes items such as:

• Contact: phone, fax, email, website
• Location: address, public transportation, parking
• Medical records: what to bring, how to obtain
• Special needs: mobility, language, hearing, vision
• Payment: How, what, when and who to contact
• Tests and test results: Which labs, how results communicated
• Afterhours and emergency care: When and how
• Prescriptions: Refills, who to call about side effects and adverse events
• Care companion: invitation to bring one

By giving us and our families this information, you communicate three important messages:

• First, that we are welcome and that you want us to be comfortable. Learn from successful hotels and treat us like guests.
• The second message is that you want us to make the best possible use of the care and services you are providing.
• And the third message is that you are accountable for what you offer: You have printed it here in black and white that this is how your hospital or practice or clinic operates and you will live up to the commitments you have made.

Now a guide like this is not something you can write on the plane as you return home. While you might be able to outline some of the elements in it, you don’t know what you don’t know. After all, you don’t need a guide, do you? Similarly your staff doesn’t need a guide, but they will have some good ideas about what should be in it – after all, they are the ones who are answering the same questions over and over.

Your main resource in developing such a guide is likely to be your patients and their families. While many of them would not be interested in helping out, you know that there are a few who would be – you know who they are.

Such a guide needs to reflect how patients and families can manage their lives within your setting now – so any such guide needs to be continually updated and tailored to the unique characteristics of your building, staff and services.

Such a basic guide may seem insignificant when you think about the technologies and therapeutic interventions that will be used to get each of your patients functioning as well as they can.

But believe me – we patients don’t see it that way. A guide like this sends a powerful message of inclusion and empathy and it helps us have a sense of control, of competence and of cooperation, all of which is critical for each of us to feel in order to engage in the tasks before us.

The second theme that we hear repeatedly is that we are shocked at how much responsibility we must take on in order to keep our treatment on track.

Here I’m thinking of a young lawyer who waited an agonizing six weeks to see a renowned specialist to treat her newly diagnosed MS, only to find the appointment worthless because her records had not been forwarded as she had requested. No one told her that it was her responsibility to hand‐carry those records if she wanted to be sure they got there.

Or the people who arrived at home after a hospitalization with clear instructions and a hard copy of their discharge plan that they were unable to implement and had to be re‐hospitalized – the single woman who was too disoriented to remember where she put the instructions; the husband away on a business trip and unable to pick up the prescriptions; the confusion about how to work the IV and the oxygen.

Some of these are simple things that in simpler times would have been done for these patients in the hospital but that people felt unprepared to cope with – and were surprised that they were on their own when they were still so vulnerable.

As I noted before, we don’t realize our participation is not an option. It is a requirement if we are going to benefit from our care.

So my question to you is – how do you communicate this sense of urgency and inclusion to the patients and families you care for?

Do you say “none of us can solve the problem caused by your accident or stroke or illness by ourselves – we must work on this together?”

Because you need to: We patients and family members don’t know this. We need to hear explicitly both the approach to the care you offer and the specifics of that care – the most important specifics being what your responsibilities are and what ours are.

After hearing how frustrated people are by trying to figure out what they are supposed to do to benefit from their care, we at the Center for Advancing Health worked with colleagues at Massachusetts General Hospital to develop and test a model “pact” for patients entering a new care setting. The pact is based on behaviors identified on the Engagement Behavior Framework and modeled on a contract used in the Geisinger Proven Care program with cardiac patients.

This pact offers an opportunity to make explicit previously assumed expectations about responsibilities of both providers and patients.

So, for example, a pact might include patients agreeing to behaviors such as “I will make my best effort

to participate fully in my therapy, even when I am feeling depressed or tired.” Or “I will ask questions when any explanations and next steps are not clear.”

On its end, the care team might agree to such behaviors as “We will ask specifically what your concerns and questions are when we are coming to an agreement about you goals for treatment and we will respond to concerns and answer questions.” Or, “We will help you understand your treatment options by discussing the pros and cons and possible outcomes with you because there is often more than one possible response to your symptoms and condition.”

You may dismiss this explicit discussion of expectations about asking questions, for example, as too obvious. Don’t. In surveys and studies and interviews we hear again and again that people are deeply uncomfortable asking questions of their care providers – we believe you will experience our queries as challenging your authority and fear punishment. Or we believe that if we need to know something, you will tell us.

There is a model pact posted on the CFAH website. While the model would need to be adapted for use in your specific setting, it spells out the responsibilities of patients and the team in a way that is both reciprocal and possible for all to aspire to.

Once again, developing and implementing such a pact may seem inconsequential relative to the work you plan to supervise with each patient. But don’t overlook the fact that in a few short moments, if you are all fortunate, this family and this patient are leaving the office or clinic or hospital. And they’ll be on their own. They – we – need to know where our responsibilities lie.

The sooner we know what the expectations are, the sooner we understand what our role is, the better prepared we will be to assume that role. The belief that we will figure this out ourselves ultimately wastes our time and yours.

Like a guide, a pact conveys important messages. You are saying to us that:

• We are part of the team.
• We have significant, complex responsibilities that you have helped us understand and define.
• And you will help us learn how to do them.

By having this conversation based on a written document, you signal that our participation is critical and you are holding yourselves accountable for helping us to participate competently.

In closing, I’d like to reflect on how these two themes and recommendations are related to the quality of the care that is delivered in your hospital or clinic or through your health plan.

You realize, of course, that we patients are as ignorant as most health professionals about what health care quality actually is. For you, quality involves everything from guideline‐based care to pay‐for‐performance to hand‐washing campaigns to the reduction of medical errors.

We patients are shocked when we hear that much of our care is not based on any scientific evidence and even more alarmed when we hear that even when there is evidence of what appropriate care is, we only receive it part of the time.

But since most of us are mostly healthy most of the time, we don’t think about this too much – and besides, we believe in our doctor the way many people believe in their Congressional representative: Congress had a 9% approval rating in April, but most people still think their own representative is doing fine.

By implementing a guide to your practice setting and a pact among clinical teams, patients and caregivers, you demonstrate in a modest way that you are organized, empathic and accountable; your staff and your policies support us and our loved ones to find our unique paths to assuming the heavy burden of responsibility for care, working with each of us to manage it in our own way.

Realistically, expecting such tools as a guide or a pact to drive a change in attitudes, behaviors and practices is asking the tail to wag the dog. These are tactical measures that subtly challenge an outdated approach to health and illness that must undergo a transformation if it is to deliver on its promise of improved outcomes. But if you implement them, you will be doing so at a time when increasingly, hospitals and physicians see their best efforts undermined because they have failed to engage and enlist their patients in their own care.

So give it a try: Take these first small steps. See if they make a difference.

You need to know how important this is to us: By directing your attention purposefully to our concerns, you help us to do the work we must do to live for as long and as well as we can – with all the grace we can muster, all the support we can find and all the dignity we deserve.

________

Resources mentioned above:

• The CFAH framework, “A New Definition of Patient Engagement” (PDF, 2632k)
• New June 7: here’s the two page summary of the framework, which she handed out during her talk
• The model pact (PDF, 69k) developed by CFAH with Mass. General.

The following is my opinion, not the Society’s, and asks for your opinion, especially if you’re a member of the Society. (It only costs $30 to join, but as always, everyone’s welcome to discuss here.)
___________

Participatory medicine is a two way street. You don’t get to be a passive lump and call yourself an empowered, engaged patient.

Last week CNN’s “Empowered Patient” correspondent Elizabeth Cohen posted something about this that popped up tonight in social media: 10 Dumb Things You Do at the Doctor’s Office. It generated a bit of disagreement on Twitter tonight. What do you think? Here’s what happened.

First, our Society’s social media team noted it on our Facebook page, and tweeted it, with this lead-in from the article:

‎”I know many of you are programmed not to question your doctor, but we can’t read your mind, so we need you to…”

It came up during tonight’s #hcsm, and someone said the article made good points but was “framed and titled disrespectfully” to patients. Well, let’s discuss.

First, here are a few of the ten “dumb” things. For the rest, go to the whole article:

1. You talk on your cell phone.

This is your health we’re talking about. Other calls can wait. Turn the thing off.

My opinion? Yeah, you’re being it’s dumb (and rude) if you consume your doctor’s precious face time (or butt time) with a phone call. Dumb. And if you think that’s disrespectful of me, okay, I think you’re being dumb. that’s dumb too.:) This is healthcare! Partner with your clinicians! Be involved, not timeslicing!

2. You lie.

“I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know… I won’t judge.”

I’m no expert, but in my travels I’ve heard from many doctors and nurses things like “Then we find out he …..” Really, people, it’s dumb if you don’t tell your care team things they need to know! Be responsible for your side of the communication!

Skipping ahead…

6. You don’t know what medications you’re taking.

“Patients should bring a list of medications they’re actually taking, not what they believe they are supposed to be taking, or what they think I want them to take…”

Right. And I was recently guilty of this – when I visited my primary, Dr. Sands, I knew that in addition to my one blood pressure pill, I was taking several supplements, but I didn’t know the specifics. So I went home and sent him the specifics. But really, it was sloppy, lazy, and a little bit irresponsible of me not to know – and I’m willing to say yeah, that was dumb.

After all, how many times have you heard “Bring a list of your current medications?” Perhaps not enough.

Perhaps your Society should develop an e-patient checklist – and if we do, I think it should include all 10 of these items.

You?

Update June 3: See our follow-up post, about Sue Woods’s terrific take on what she would say on the 10 dumb things.

Would you like to join our social media team? We’re always open to people who “get it” about social media, and who actually have bandwidth to commit to the team: occasional meeting calls, regular “socmed” duties, etc. Write to volunteers at participatorymedicine.org.

• Jane Sarasohn-Kahn of Health Populi gave the keynote for Day 2
• Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)
• Brian Ahier presented on the status of health IT, as Meaningful Use rolls out. (“You can’t measure the improvements that you gotta measure, unless you have computers keeping track of it.”)
• I gave a half-day pre-conference workshop titled “Participatory Health: Reshaping Patient Care.” I’m told the workshop had 40-50% higher registration than usual: interest in participatory medicine is strong.

An unexpected bonus was that right outside the workshop door, a poster presentation addressed some questions people often ask about patient participation and online health records:

• Will patients with problems actually use a PHR (personal health record)? (Many observers say PHRs are a non-starter, a pointless exercise.)
• Especially, will poor people use one?
  • Obviously, most don’t even have a computer.
  • Plus, computer literacy is necessary, and education levels among the poor are statistically lower. Frankly, are such people smart enough? (Many observers won’t come out and say it, but in my experience that’s what it boils down to.)
  • Note: People in lower socio-economic tiers are often referred to as “safety net” populations – they can’t afford insurance, so the only care they get is whatever “safety net” their state or region provides.
• What about people with mental diagnoses – substance abuse, depression (low motivation?), etc.?

Those are the questions examined by this project, produced by an Emory University team headed by Benjamin Druss, MD, MPH and funded by a grant from AHRQ (Agency for Healthcare Research and Quality). They studied a population of safety net patients with at least one mental illness diagnosis and one or more additional conditions (co-morbidities).

Final results (including health outcomes) won’t be available until this fall, but clear evidence has emerged about PHR use (and benefits). Here’s the poster. Click to view PDF, 420k:

The early impressions (bottom right) caught my attention: (emphasis added)

I seized the opportunity to speak with Emory’s Silke von Esenwein PhD, who was there; she was lead author on the poster. I pulled out my Flipcam and did a very rough, quick hallway interview. (The ringing sound at the start is the hallway chimes, as we were called back into session.)

I’m fascinated with the evidence that computer access is less of a barrier than anticipated. But it’s not a shock:

• Last month SPM member Ted Eytan MD showed me a snapshot of “safety net” people in his neighborhood, occupying every single computer the local library has.
• Last November John Moore at Chilmark Research posted Smashing Myths & Assumptions: PHR for Urban Diabetes Care, which documented that for the urban poor, their handheld is sometimes their “medical home.” (And they use it!)

Silke agreed with the off-the-cuff remark at the end of the video:

Many people believe it’s just not imaginable that people who don’t have a good life could be good at this.

It’s too early to draw firm conclusions from this study, and any study should be replicated (though much medical research never is). But however well-meaning those concerns may be, it appears they’re superstitions, not science. So let’s get over that and get on with empowering, equipping and enabling our citizens, so they can be engaged in their care.

All our citizens. With nobody left out.
_______

p.s. The PHR used in the study was “My Health Record,” which was adapted by Emory for this purpose from Shared Care Plan, a free county-wide PHR in Whatcom County, Washington. What would be possible if everyone you know had access to such a tool? (Here’s the punch line: free PHRs do exist.)

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