07/27/2016 10:08 am ET Updated Jul 28, 2017

The Limits of Google: How Patients Can Find Out What Works In Medical Care

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When you feel sick, even before you go to the doctor, where do you look for information? Many go to Google or other search engines, but that information isn't always reliable. Besides, it is often downright scary. And how can anyone trust TV advertisements that promise fields of flowers and happiness to anyone who takes the medication, all while a dispassionate voice-over lists terrible side effects.

We are all supposed to be "engaged patients". We are supposed to research our symptoms and diagnoses. But "patient engagement" is one of the most overused and least understood terms in health care discussions today. Everyone talks about the need for it, but few know how to really use patient input. Some doctors welcome an informed patient; others not so much. Some organizations will put one patient on their board or advisory committee and consider patient engagement done.

As someone who has served as a consumer representative on boards that evaluate new treatments, I can tell you that patient engagement is critically important to assessing what really works in terms of treatment and care, and what research is needed to inform decision making.

Yet few opportunities for this exist.

In fact, special interests and those frightened of change, are challenging evidence-based efforts to evaluate health care system innovations and high-cost drug treatments. Instead of fighting these efforts, they should be demanding more of them and insist that patient voices are part of the discussion.

You may have heard that less than 20% of what physicians do has solid medical research to support it. That's kind of astounding when you think about it. Doctors do something because that's the way they were trained to do it, and until new information comes to light, they will continue to do it the same way. Take the treatment for ear infections in kids. Doctors prescribe or parents demand tubes, antibiotics, anything to stop the pain. But good research shows that too many antibiotics have negative outcomes. As a result, treatment for ear infections has changed appropriately over the past several years. Same for tonsillectomies, the third most frequent surgery for children.

Fortunately for patients, there are two places where their voices will be heard and where they can find good, evidence-based information. One is a non-governmental nonprofit program called PCORI (Patient-Centered Outcomes Research Institute); the other is a nonprofit called ICER (Institute for Clinical and Economic Review). PCORI was funded in 2010 by the federal government as part of the Affordable Care Act (one of the many aspects of "Obamacare" most don't know about). The Institute's money comes from the government and fees assessed to private insurance and self-insured employer-based plans, but PCORI is completely independent and conducts its business in public. PCORI's mission is "to help people make informed healthcare decisions, and improve healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community." PCORI meetings are public and patients are heavily involved in deciding what research should be done and by whom. PCORI's research has included how to best manage side effects of cancer treatment, how to help people recover from strokes more rapidly, and how to pull specialists together to more effectively treat lung cancer. These research projects were all selected and guided by patient input.

Patient voices are also being sought in the evaluation of drugs for conditions like diabetes, multiple sclerosis, high cholesterol, or psoriasis. Many of these drugs are advertised constantly on TV with little helpful information for patients about which of the side effects is most prevalent or serious, how effective the drug is or how much it costs. ICER provides this information. Seventy percent of ICER's funding comes from nonprofit foundations (70%) with the remaining coming from life science companies and health insurance companies. ICER is "dedicated to improving patient care by providing independent, completely transparent evaluations of how new drugs compare to existing treatments". ICER differs from the FDA by looking at the cost of treatments as well as their effectiveness in two ways - in comparison to no treatment (as the FDA does) and in comparison to existing treatments (as the FDA does not do). This is helpful for patients making their decisions when their insurance does not cover the drug or when deductibles or coinsurance may be very high.

ICER works through three independent review bodies of practicing physicians, methodology experts and patient advocates that meet three times a year in New England, the Midwest and California to look at the evidence for the effectiveness of new treatments or drugs. I was a consumer member of the California panel, CTAF (California Technology Assessment Forum) for many years, so I know how challenging it is to integrate a non-clinical voice in the decision-making. The issues are complex and the information is often incomplete or highly technical. However, patients or consumers can bring a practical focus to the discussion, especially when we try to define terms such as "quality of life" or question the value of a drug that costs hundreds of thousands of dollars and extends life by only a few weeks.

PCORI and ICER are great resources for patients and their providers. The reports they issue are more reliable than what any internet search can provide. ICER is the only independent national resource that offers credible information about the real elephant in the room--the cost of a new drug, particularly as it compares to existing drugs for the same condition. And ICER involves patients in making those determinations.

ICER's process first assesses how well a drug works, the side effects it produces, and how it compares to similar drugs and treatments. Only after this analysis does ICER look at cost. Will a medication reduce future costs by keeping you healthier? Does it offer benefits that no other medication on the market can? Or will it lead to escalating and unsustainable costs for you and for the entire health care system to the point where no one will be available to afford the innovative treatment? For example, ICER recently issued a report that concluded that Entresto™ does offer excellent long term value to treat patients with Congestive Heart Failure. Some payers were concerned that the drug was too expensive and so were hesitant to approve it. The ICER report found that its price, when normal discounts were factored in, represented a good value. This report increased the likelihood that patients who might benefit from the drug will have it covered by their insurance.

ICER calculates a fair benchmark price to the manufacturer, the payer, the patient and the overall health system, so that these decisions can be made collaboratively in full view of you, the patient. These decisions have always been made behind closed doors, so the fact that cost is being addressed and discussed openly provides patients with a significant advantage.

Still, when it comes to considering costs, some patient advocacy groups get nervous when the subject comes up. I would not be fair if I did not address some of the key questions many patient advocates worry about, perhaps the biggest one being "will the consideration of cost mean I lose access to a drug or treatment I need?"

  1. Why should cost be considered if a drug can significantly improve my health? The most important question you should ask is whether or not a treatment or drug actually works for your individual condition. But the cost of that treatment is also important. You may have a very high deductible to pay, and if the treatment is of questionable effectiveness, that cost factor may be very important in your decision making process. Looked at more broadly, it would be irresponsible for a physician to recommend treatments without any assessment of value or the budget impact over the long-term. Is the cost so high that it will strain state health budgets, force cutbacks in other community services or generate unaffordable increases in insurance premiums?
  1. How much influence do the drug manufacturers or insurance companies have over decisions made by PCORI and ICER? PCORI's Board of Directors is selected by the Comptroller General of the United States and is mandated to include at least three patient representatives, along with physicians, researchers, and insurance companies and other payers. ICER's Governance Board has fiduciary responsibility for the overall operations of ICER, and provides important strategic counsel to ICER's leadership team. The Governance Board represent a broad range of stakeholder perspectives, including patient and consumer groups, health plans, manufacturers, and other national leaders in health policy. In fact, two new members were recently elected to ICER's Governance Board - Ellen Andrews, PhD and Frances Visco, JD. Both have extensive experience in patient and consumer advocacy.
  1. Don't insurance companies dominate these organizations? Actually, insurers are not in the majority of decision making of either organization. They are at the table because they have a huge stake in deciding what to pay for, since they must distribute resources fairly to all patients who are members. Researchers and medical personnel are much more heavily represented on these boards and panels, because the complexity of research design is something that even insurance companies don't always understand. And ICER seeks direct input from patients and clinicians on what they feel is important to their care, what outcomes they seek, and what evidence should be assessed. For example, multiple myeloma patient groups told ICER that it was very important to them to have options for oral medication given how often they have to go to clinics for IV administration.
  1. If drug prices are questioned, will that stall innovation? Innovation is essential to improving patient health. We are fortunate to have a drug manufacturing industry that is producing a burgeoning pipeline of new promising drugs for a range of medical conditions. But many of these drugs are landing on the market with hefty price tags that are out of range for many people. There is no point to innovation if no one can afford the new drugs or benefits that they offer.
  1. Why do we need a PCORI or ICER anyway? Most patients would not want to take a drug if they didn't know it worked, yet we do it all the time. The FDA assesses drugs for safety but does not compare one drug to another or look at the cost of a drug. We need organizations that are objective, not dominated by one type of stakeholder or another, and that operate in an open environment where patients can voice their preferences and ask questions.

Bottom line? An internet search can get you started when you need information. But as a patient, you need to know that there are places you can trust to give you the whole story. The more organizations like PCORI and ICER that we have, the faster we will get to a place in medicine that gives us information we can depend on.