• We’ll soon be buried in patient decision aids

    I haven’t yet submitted a proposal to the Patient Centered Outcomes Research Institute (PCORI), but I know a few things about the process from reading and talking to colleagues who have reviewed PCORI grant proposals. One of PCORI’s goals is to promote patient engagement and shared decision-making, so a common element of PCORI-funded projects is the development of a patient decision aid. That’s a tool to help patients make decisions about what treatment is most aligned with their preferences.

    Does anyone notice a problem?

    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.

    Better still, perhaps we should not be asking researchers to produce decision aids at all, but to report their findings to bodies that specialize in such things and in some consistent way to facilitate their rapid development and updating. That’s just my two cents.

    As for assessing decision aid quality, I refer you to the recent paper on the subject by Natalie Joseph-Williams and colleagues.

    To ensure minimum standards for the protection of patients, health care professionals, and policy makers, this study provides a preliminary set of qualifying and certification criteria for patient decision aids that could be considered for certification purposes. However, they must be considered in conjunction with evidence appraisal processes, as the proposed criteria cannot certify the accuracy of clinical content. Further work is needed to test the feasibility of the proposed criteria in order to determine the proportion of available decision aids that meet the proposed criteria, and exact scoring and rating processes need to be tested and agreed. As decision aid outcomes are measured with greater consistency, correlational analysis of decision aid quality scores with associated trial outcomes might prove informative in refining the selection process of minimum standards.

    As for organizations that might develop aids that integrate the work of many studies, see, for example, HealthwiseEmmi SolutionsHealth Dialog, as well as the Option Grid collaborative. I’m too green in this area to comment on the work of any of these groups, but if you know more, I’m interested.


    • A related subject, what will happen when every patient wants a wireless monitor for 24/7 “care”. Wireless monitors are coming. Be afraid, very afraid.

      • We shouldn’t be afraid of this type of monitoring for much of it is relatively inexpensive and can become less expensive with greater use avoiding other expenses. It is this cost fear by government and government’s control that has slowed this type of innovation that can actually save money and lives while improving care.

        Example: Strokes in the elderly create a lot of cost for everyone involved and lead to disability and premature death. One of the causes of stroke is Atrial fibrillation previously unknown. A recent Swedish study on unknown AF in the elderly demonstrates how these new technologies can discover asymptomatic patients that can be treated with medication reducing the number of strokes.

        Take note that Apple is considering apps to do this type of monitoring on its i phone. If used wisely (patients in control and open to financial risk) it will be relatively inexpensive, become less expensive with time and if the patient is paying we might see a better selection of what works and what doesn’t.

        Take diabetes monitoring. Some of my best patients were diabetics that had no insurance. They learned what they had to do and how to do it. Their efficiency was amazing. Near 100% coverage is sometimes a hinderance rather than a help.

        • Yes, you are right, the monitors are being designed to interface with smart phones. But who will monitor the monitors? And who will pay to monitor the monitors? And who will be responsible if someone doesn’t monitor the monitors? The answer to the first question is somebody in India. The answer to the second question is us. The answer to the third question is nobody.

          • Some diseases will be more difficult to monitor and others will be simply yes or no. Take the earlier atrial fibrillation example and a 75 year old that would be around the age group of most concern for non diagnosed atrial fibrillation. That testing could be done without a physician unless the result turned out to be positive which would then require medical confirmation and potential treatment.

            The costs will climb the second the testing is placed under the medical umbrella with indirect third party payments. Left in the open market this type of monitoring could be performed almost for free. It is really easy. I’ve been monitoring pacemakers by phone for decades.

            I can provide many more examples. It is just a matter of letting the market place function.

    • Your analysis is clear and accurate so much and no focus. This is becoming a shouting match between treatments to drive uptake.

      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 I believe is missing here 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.

    • Medpac discussed Medicare beneficiary engagement, involvement in provider selection and mentioned a possible new supplement policy, ‘Medicare Select’ with incentives for making better decisions based on evidence medicine, cost and quality. A bending the cost needle via engagement and driving the Value agenda.

      Optum has the analytic tools to enable analysis and end product for consumer decisions.

    • I recommend readers check out the Ottawa Hospital Research Institure at http://decisionaid.ohri.ca. You’ll find an A-Z list of decision aids with links to the full text (if available) and/or their online versions, an appraisal of each using the International Patient Decision Aids Standards (IPDAS) collaboration’s tool, tutorials on using decision aids and links to other resources, including an ongoing Cochrane systematic review about what works to enhance uptake of aids. You will also find a “generic” decision aid that can be used for any type do decision. Like for example the CASP tools for appraising research, the IPDAS represents the consensus of the best thinkers and scientists who have made SDM their life’s work. We have a long ways to go, but of course the best decision aids incorporate the best available evidence, a clear and practical representation of trade-offs and their probabilities (ideally based on the pooled evidence) of preference-sensitive decisions. Much more science needs to be conducted to determine the best approaches. PCORI is the most the best organization to support that at the moment.

    • There are some organized efforts to assess and certify patient decision aids with many groups working to advance shared decision making and development of patient-decision aids. Chief among these is The International Patient Decision Aid Standards Collaboration (IPDAS) which includes researchers, practitioners and stakeholders from 14 countries working to establish international standards to determine the quality of patient-decision aids. Other organizations, such as Healthwise and Health Dialog, contract with health plans to make SDM tools available to providers and patients. Another organization working to advance the science and implementation of shared decision making is the Foundation for Informed Decision Making, which works with Health Dialog to develop and make PDAs available to patients.

    • With regards to setting standards for patient decision aids, the New America Foundation issued a white paper on the topic in January: . They suggest two options: a Federal certifying body and many state certifying bodies.

      The shared decision making provisions in the ACA suggest a third option – an external entity that is contracted by the Secretary to establish standards (a la NQF). For your reference see PL 111-148 Sec. 3506 (c).

      I’m not sure where this provision stands at the moment. Zeke Emanuel wrote an op-ed advocating for its implementation in January: http://www.nejm.org/doi/full/10.1056/NEJMp1209500.