Getting to the decision point

I am interested in shared medical decision making, and its value to patients. In an excellent paper on the subject, Charles et al. (Soc Sci Med 1997 Mar;44(5):681-692) identified the critical features of shared decision making in a healthcare context as follows:

That at least two participants, (physician and patient), are involved,
That both parties share information,
That both parties take steps to build a consensus about the preferred treatment,
That an agreement is reached on the treatment to implement.

I think this is a really useful framework for those who think about this issue.

I like to characterise the agreement of both parties as concordance, (a phrase originally applied in a medical context by the Royal Pharmaceutical Society of Great Britain), by which I mean, mutual agreement. If there is mutual agreement to proceed along a specific course, based on full participation by both parties, and an exchange between them, then I think there is concordance.

The agreement, however, leads to another element, and that is an expectation. Because the critical patient is interested in patient informatics, I think that it is important to be clear that the patient has an expectation of the outcome of the agreed course of action.

I think that many health care professionals overlook this aspect, and proceed on the basis of their expectation, rather than the patient's. So what can a patient do?

The key is for both parties to be upfront about their expectations.

Here are some ideas as to how to make that happen:

Inform the doctor about the patient’s problem, including the effect on them personally,
Specify how involved the patient wants to be in making the decision,
Facilitate the inclusion of the patient and doctor's personal values, fears and aspirations,
Inform the patient about their diagnosis, and treatment options,
Identify the specific decision that needs to be made, (including the option of no treatment),
Clarify and illustrate the risk associated with each treatment option,
Identify the patient’s lack of specific knowledge about this condition,
Identify other decisional conflicts [1] [2] that the patient may have,
Identify high quality evidence based information resources,
Identify a set of decision aids [3] [4] to improve knowledge and recall,
Outline a plan and timeframe for the process.

With this list, both parties can look at the process, and make a rational and shared decision as to whether the treatment is appropriate, and in line with good medical practice and the what the patient expects to happen.

Try it out next time you have a medical decision to make. I think it will give you a greater sense of participation and ultimately satisfaction with the outcome, even if the outcome did not meet original expectations due to complications that were considered in the decision making process.

Stay healthy,

Foster

[1] O’Connor A, Rostom A, Fiset V, Tetroe J, Entwhistle V, Llewellyn_Thomas H, Holmes_Rovner M, Barry M, Jones J Decision aids for patients facing health treatment or screening decisions:systematic review 1999 BMJ 319:731-734
[2] Murray E, Davis h, Tai SS, Coulter A, Gray A, Haines A Ransomised controlled trial of an interactive multimedia decision aid on hormone repleacement therapy in primary care 2001 BMJ 323:490
[3] O’Connor a, Rostrom A, Tetroe J, Fiset V, Entwhistle V, Llewellyn-Thomas H, Holmes-Rovner M, Barry M, Jones J Effectiveness of decision aids for people facing health treatment of screening decisions 1999 Best Evid. Health Care Cochrane Colloq. http://www.cochrane.org/reviews/en/ab001431.html
[4] http://decisionaid.ohri.ca/docs/Cochrane_Summary.pdf accessed September 12,2006

A question of information

The Boston Globe carried my letter yesterday, (March 12th), about the need for high quality patient oriented information on costs, efficacy, outcomes and so on.

I think that this is a serious debate, particularly in the US, because of the increasing pressure on patients to absorb more and more of their own healthcare costs.

As an example, I needed a blood glucose test recently for insurance, and I called my local hospital to know how much it would cost because I was paying for it myself. I have insurance, but this was not a medical treatment, and not medically necessary. After being passed around for a while, they told me that it would cost $41, so I went ahead and set it up.

A week later I got the bill. The charge? $156, almost four times the original, "quote." I am, "in discussion," with the hospital as to the reason. Initially they denied that they would provide any quotes for blood testing, but eventually conceded that it may have happened, "in error!"

My point, and the point of my letter, is that how can the system expect patients to undertake preventative medical procedures, such as a colonoscopy or a blood test, if you cannot get an accurate quote from the hospital. Many health plans are now requiring that the patient pick up several thousand dollars in deductibles, (mine does), and so I want to get the best value for my money. The hospital system does not seem to recognize that, but I suspect that in time they will be forced to change. At least I hope so, and I will be the first to commend those that offer their costs up front.

The one state in the union to encourage and participate in this is New Hampshire, which recently introduced a new system to allow patients to input their insurance information and gives a range of prices based on a select number of procedures. Check it out at: http://www.nhhealthcost.org/

This is a good first step, and the Department of Health and Human Services are to be commended.

The link to my own correspondence is: http://www.boston.com/news/globe/editorial_opinion/letters/articles/2007/03/12/just_tell_us_what_healthcare_costs/

Take care!

Foster

So how are you doing Doc?

There have been a couple of examples of patient care information that has been made available recently. Paul Levy of Beth Israel Deaconess hospital in Boston has posted the central line infection rates for that that hospital, (http://runningahospital.blogspot.com/2007/02/we-saved-one-persons-life-can-we-keep.html). Good for him!

Pennsylvania has a statewide hospital infections report; (http://www.phc4.org/reports/hai/05/) even better!

Now patients in Pennsylvania can go look up which hospital has the best or worst infection rates as they make decisions, (at least I hope they take this information into account), about where to have elective surgery undertaken. The critical patient hopes to see many more states and hospitals promote the publication of these important barometers of patient health.

A good framework for this was provided by the Institute of Medicine, (IOM), report, “To err is human,” National Academy Press, 2000. That is the report so often quoted as the source of the statistic that up to 98,000 people in America die every year of medical mistakes.

What is interesting, and often overlooked, is that this figure is derived from two studies in Colorado/Utah and New York. That is a small base on which to extrapolate such an important statistic nationally, and the only way that this shortcoming will be overcome, (if there is a shortcoming), is to publish the data for hospitals and clinics nationwide.

That data should include not just the infection rates, but also the adverse drug events, incorrect procedures, and error rates related to individual procedures or diagnosis.

Most patients want to get better, and by tracking resolutions by diagnosis rates by individual hospitals, patients can potentially see where the hospital with the best outcomes for their condition is. That should not be confused with the number of procedures that hospitals undertake, which is never a barometer of successful outcomes.

The IOM made several recommendations, of which one is that health organizations should be setting up safety programs within their own organizations, and reporting the outcomes of those programs to patients and other interested parties.

The critical patient completely agrees with this recommendation, but sees limited evidence that this is happening. Do you know if it is happening, and we are just not seeing it in the information overload?

If we expect patients to make good health care decisions, then as practitioners, we have to make the data for them to do that available.

Thanks,

Foster

Why be so evasive?

I am constantly frustrated by the lack of good patient information on hospital websites. There are a couple of exceptions, but specifically the critical patient is concerned about hospitals that don't keep to the legal requirements for HIPAA.

HIPAA specified that hospitals with websites, MUST have a prominent link to an electronic version of their privacy notice, and that has to be written in, "plain language." Of course the Federal Government provides no formal definition of plain language, so you have to work that out. Generally, it seems to be accepted that plain language means that the notice should be readable by people who have completed grade 6 schooling. You can measure that by running a readability test.

There are several products out there to do this, including Microsoft word. I used a product that I purchased called Readability. That has a number of readability measurements available. If you are interested in what these are, then Google, "readability" and that will lead you to a technical discussion on the subject. I am not going to discuss it here.

I took a survey of every hospital in New Hampshire, and a couple in Massachusetts, in July 2006, and found that NONE of them met the plain language requirement. Of the hospitals surveyed, only 80% met the requirement to have a link to their notice. Why is this? I don't get it.

Now this is a case where the Government is NOT to blame, because they have posted a variety of simple notices on the HHS OCR website, but hospitals just ignored them. Very dissapointing.

So what can the critical patient do? Well, one thing to do is to let your hospital administrator know the law, and make them aware that they are in transgression. That usually gets their attention.

Secondly, make yourself aware of the regulations, and what the hospital can do with your information. The worst one I came across was the hospital who could make your information available to anyone who worked or volunteered in the hospital. Now volunteers are great people, and so are janitors, but I am not so sure that I want them having access to my personal health information. Do you?

So check the details of where your information resides, and let the hospital know if you agree or don't. It is their responsibility to keep your information private and confidential. Make sure that you keep their toes to the fire on that one.

With the advent of all this information about healthcare, one of the big dangers is losing track of information, and allowing Mrs. Smith next door to have a look at your latest blood test results. Hmmmm.

Be healthy,


Foster.

In the beginning...

This is my first step into the world of blogging, where I am hoping to create a forum for patient information. If you are interested in the subject of Patient or Healthcare informatics, then this is a forum for you.

This is not intended as a blog where patients bash the medical profession, but will host a more rational discussion of patient related issues, whether they appear in the press, medical journals, from personal experiences, heard on the street, or inputs from patients highlighting issues of concern to them. Of course, I hope that medical professionals will also publish their thoughts on patients, the good, the bad and the ugly.

Feel free to comment, but please don't be abusive or coarse, because that will be blocked as much as possible.

If you are criticized here, then don't take offense, but give us your perspective. A good debate on the issues helps to clear up the misunderstandings that happen every day.

Is this too ambitious? Am I biting off more than I can chew? Let me know.

Cheers,

Foster.