Notes & Links: October 10, 2013

We’ll Soon Be Buried in Patient Decision Aids
Austin Frakt posting at The Incidental Economist speaks to the potential problems associated with Patient Centered Outcomes Research Institute (PCORI) goal to promote patient engagement and shared decision making. Frakt identifies the problem this way…

In fact, there are two. Think about it: If every comparative effectiveness research (CER) project develops its own patient decision aid we’ll have (a) a ton of decision aids of varying usefulness and in potential conflict and (b) relatively few decision aids that unify the findings of a body of work.
Therefore, we need (a) some way to assess the quality of decision aids and (b) organizations that can integrate across many CER studies to produce more robust and trusted ones

Two points I want to make. When my wife was dx with NSCLC her oncologist did a very simple thing. He drew a horizontal line on a chart note. On the left side he put the word ‘me’ on the right side he put the word ‘you’. He said to her on the line put an X where you want us to work together. All the way to the left I make all decisions all the way to the right you make all the decisions. That is shared decision making at its clearest and most effective. And it drove her patient decision making through discussion and evidence.

The second point is that I believe these decision aids are created based on the goal to position one treatment over another. Albeit based on evidence. What is missing is the determination of what problems the patient wants to solve specific to the disease or treatment they are facing. Patient decision tools should be less about shouting benefit and more about solving the problem the patient is seeking answers to. The tool should present the evidence while speaking to a problem say QOL or survival or cost. If we know what the patient wants to know the tools become effective at decision making.

The Cancer Treatment Centers of America Revisited: From “naturopathic oncology” to Burzynski-like Genomic Testing
ScienceBlogs Respectful Insolence takes an extended and in-depth review of The Cancer Treatment Centers of America (CTCA). I try to steer clear of the long and heavily analyzed posts. I am making an exception here simply because of my personal experience.

Donna was diagnosed with stage IV NSCLC told she had six months to live. We went to a local academic medical center where she received evidence based care that extended that six months to nearly three years. During that time and well after her passing I have seen on TV and in print advertising for CTCA. Their media buy is huge if you consider they are buying prime time news in NYC for the Philly center. Their print buy includes the NY Times Sunday edition. 

Watching and reading the media made me second guess our care and treatment. This article has had the desired effect to end my second guessing once and for all. 

Here is one long segment from a very long article.

It’s rather amazing here how so many of the things that are wrong with “integrative oncology” are right there on a single page. Look at the list of therapies. They range from the purest quackery (homeopathy) to what should be science-based medicine (physical therapy and exercise therapy) and everything in between. I realize that most readers of SBM know what homeopathy is and why it is quackery, but in case there are new readers seeing this, I’ll briefly recap. Homeopathy postulates two main ideas, both of which have no basis in science: First that you relieve symptoms by using a substance that causes the symptom being treated, and, second, that diluting a substance makes it stronger. Of course, the substance must be diluted with strong shaking (known as “succussion” in homeopathy lingo) between each serial dilution step. Most homeopathic remedies are diluted so much that there is almost certainly nothing left of the original remedy. For example, Avogadro’s number (the number of molecules in a mole of a substance) is on the order of 6 x 1023. A typical homeopathic dilution is represented as “C,” where each “C” equals a 1:100 dilution. So, a 1C dilution is a 1:100 dilution; a 2C dilution is a 1:10,000 dilution (100 x 100); and so on. If you get to 12C, you’re talking a 1024 dilution, which is already greater than Avogadro’s number. That means that it’s unlikely that more than one molecule of the substance remains, and that assumes the homeopath started with a mole of the substance being diluted, which is rarely the case. Usually the homeopath starts with much less. Now consider that typical homeopathic dilutions are 30C (1060), more than 1036 orders of magnitude greater than Avogadro’s number, and just how quacky homeopathy is comes into focus. Sure, homeopaths will wave their hands about the “memory or water” or “nanoparticles,” but in reality homeopathy is nothing more than magical thinking. The same is largely true for acupuncture, which is nothing more than a theatrical placebo, and studies claiming otherwiseare uniformly unconvincing.

This is an important article that we should all read in order to counter the huge media buy and messages of CTCA. Sometimes the fear and hopelessness of cancer blinds us.

For Whom Does it Work? Moderators of Outcome on the Effect of a Transdiagnostic Internet-Based Maintenance Treatment After Inpatient Psychotherapy: Randomized Controlled Trial.
Ebert, Gollwitz, et al published this study in JMIR studied who will benefit from Internet-based maintenance treatments for mental disorders. 

This is of interest because the study identifies who will benefit from this type of intervention. With the vast number of existing and new medical/healthcare apps appearing weekly few of them have studied what outcomes can be expected let alone studied who will most benefit. And this can be extended in part to Web based medical and healthcare applications. This study offer readers an in-depth understanding of who will out study benefit.

Conclusion: Transdiagnostic Internet-based guided self-help interventions may represent a cost-effective, far-reaching method for implementing maintenance phase treatments. Findings from the current study suggest that TIMT following inpatient psychotherapy helps patients differing in various characteristics to maintain treatment outcome. It is especially effective for participants with low education levels. Although some subgroups were identified as having profited less from the intervention than others, all subgroups benefited significantly. Future studies should replicate our results before clinical application.

Tim O’Reilly Discusses Collective Intelligence
A short video chock full of concepts and Ideas. Looks at the future think today and places it squarely into the context of medicine. 

Shared Decision Making, Social Media, Adult Learning, Palliative Care, and Hospice a Marriage Made In Heaven

January 3, 2013 Emily Oshima Lee, M.A. and Exekiel J. Emanuel, M.D. Ph.D published a perspective article in the NEJM on “Shared Decision Making to Improve Care and Reduce Costs” Here is the link.

The authors examined the current state of shared decision making (SDM) and how the Affordable Care Act (ACA) positions and expands its benefits. 

Shared decision making (SDM) ensures that medical care aligns with patient’s preferences and values. SDM applies decision aids to inform both patients and family of various treatment outcomes which in turn improves patient knowledge, minimizes anxiety, improves outcomes while helping to manage cost. It is a win win for patient, HCP, and institution. 

But sadly SDM is under used. The authors point out a study of over 1,000 office visits with more than 3,500 medical decisions showed less than 10% of the decisions met the minimum standard for SDM. Another study showed that only 41% of Medicare patients thought their treatment reflected their preference for palliative care over more aggressive treatment. 

Section 3506 in the ACA (found here) offers funding for consensus-based standards and would certify patient decision aids. Health care providers (HCP) would be eligible for grants in this area to test SDM models and approaches that show savings, improved quality of care, etc. 

The authors point to data that demonstrates SDM reduces cost shown by the fact that nearly 20% of patients who participate in SDM choose less invasive surgical options and the conservative treatment than patients who do not use decision aids. Using SDM for just 11 procedures could yield greater than $9 billion in savings across the nation.

It is interesting that the International Patient Decision Aid Standards Collaboration has evidence-based guideline for certification that includes questions in order to aid patient to gain insight on their values and those values that affect their decisions. All of this includes up-to-date data in simple plain language including side effects and complications. 

I would recommend you read the entire piece. It is short but filled with data, information, knowledge, and recommendations. 

For me SDM is part and parcel of adult learning and social media (SM). I am in no way questioning how SDM has worked, is working, and will work. Nor am I second guessing the data. In my view SDM integrates SM and adult learning to potentiate its benefits. 

The primary principle of adult learning tells us adults will learn when they are seeking solutions to problems they want to solve. Patients facing complicated and confusing treatments are seeking solutions to serious problems. SDM steps into to help solve the problem using aids, questionnaires, and electronic media. And by all studies is successful in achieving outcomes. SDM works and is in fact helping patients solve problems while at the same time solving problems for the HCP. There is nothing to change but, can we add a little something something to improve an already good idea?

Perhaps if prior to the first SDM discussion a short inventory is performed to determine what problems the patient wants to solve, what solutions do they know, what do they think about what they know, and based on that what would they do. This exercise is designed to improve the HCP knowledge of the patient prior to the SDM discussion and aids in focusing the patient on treatment decisions. It also aids in improving the decisions. For the HCP this should be considers a needs assessment for a specific patient on a specific topic. What is determined here is information that can be used to improve SDM. 

Palliative care is an ongoing decision making exercise. In a previous post (here) I examined the role of the palliative care physician and hospice care to improve patient care. SDM improves this process and fits so well with the entire continuum of palliative care through to hospice. SDM should be part of all cancer care and should be especially valuable with those patients facing a terminal outcome. SDM is a perfect tool in palliative care but would benefit from doing the type of needs assessment mentioned above and ongoing measurement of change in patient attitude and problems. The trajectory of the disease is one that requires continual learning and discussion. 

Finally, social media can aid this entire process through connecting of patients with each other and with their HCP. These communities of sharing and exchanging knowledge and information focused on a medical need can underpin and become the foundation for understanding those problems the patient wants to solve as well as the the HCP has regarding patients. Social media becomes part of SDM  strategy as a tactic to engage more patients with the process of decision making at a more robust level. 

SM is a tool a tactic whose application is critical to achieving goals through a strategy. SDM offers a very clear set of goals and path to achieve better patient outcomes. SM can be integrated into SDM to improve the process across the board.