The Patient Is In: Sourcing and Verifying Online Information

Turning Your Doctor On to Discussing Web Information

To offer a well considered article on how to invite physicians to address health-related questions that are prompted by material patients encounter online, our blogging trio (M. Dimor, C. Gonzalez and Dr. M. Ryan) decided to tackle the topic from our unique perspectives as patients and doctor, respectively. Here’s what we came up with:

In approaching your doctor to consider queries stemming from your research on the Web, you might begin by pointing out that more patients are looking online for answers. This trend truly creates a need for doctors to provide clarity and direction. Patients want to ‘partner’ with their health care provider (HCP). To ignore this trend or avoid it may be counter to improving outcomes and managing changes in their practice.

While this might not be a motivator for all doctors, it is worth mentioning to your physician that providing a sounding board for your web-drawn information allows you to play a more powerful role in your health management. It is a balance of autonomy and paternalism that this sharing provides.[1]

Looking at it another way, by encouraging patients to share what they have gathered online, physicians enhance the decision-making process. This approach then becomes a tool to improve delivery of care.[2] It serves as a starting point for your doctor to begin instructing you and to learn what else you seek medical counsel for, in keeping with the Patient Protection and Accountable Care Act. [3] There is also the added benefit of better understanding and establishing reasonable expectations for treatment outcomes, managing future conflicts and assisting with in-depth risk vs. benefit discussions.

Of course, if the appeal to better treatment weren’t enough, there are also powerful financial reasons. “A patient armed with the information and empowered to make decisions in partnership with their clinician has the potential to have a major impact on cost, quality and outcomes,” says Floyd J. Fowler Jr., PhD, president of the Foundation for Informed Medical Decision Making (FIMDM), a non-profit organization in Boston. “Shared decision making consistently improves the quality and value of the medical encounter by allowing the doctor to focus on the issues that matter most to the patient.”

While all these admonitions are not necessarily required to convince your doctor that entertaining web-based information is good your discussions, it well worth understanding the physician mindset and heading off resistance in all its dimensions. With that in mind, assure your doctor that discussing web-gathered medical data does not violate evidence-based medicine (EBM). Rather, it provides your practitioner with insights on how you make health choices, including your concerns and preferences.

What Patients Would Like: A Short Wish List
Depending on the level of web-based sophistication, patients may wish to share the latest on what studies they have uncovered in their research to clippings from various generic medical web sites. What is more important is that patients be assured that the information they bring to their doctors will:

o Improve access to their physician

o Help them better understand their physician’s clinical decisions and the management of their illness or care

o Help their physician to better understand and address patient concerns and needs

o Present the patient accurately

o Indicate why this information is important to the patient

o Not spur an unwelcome reception that triggers self-imposed censorship

No matter where on the web sources are collected, patients need to know that their doctor is open to hearing about what prompted their questions or concerns. Over time, with the physician’s guidance, the patient will learn what works and doesn’t work to communicate his knowledge and understanding. This process serves as a feedback loop that helps patients better comprehend what works well in managing their care. Physicians should not ignore or shrug off any information presented, but instead use it to motivate and drive management and improved treatment.

Just as doctors have a responsibility to listen to patients, patients should be clear about what they bring to a doctor’s consideration. For doctor’s visits to be effective, patients should take the time to ask themselves these questions when carrying web-based information to their doctor:

o Why is this information important to me?

o What does this information say?

o What don’t I understand about what I have here?

o Does this information fit with the goals my physician has set for my care?

o What do I want my physician to see when s/he reads this?

o Why is this information more important than other information?

When making your yearly check up appointment, be sure to ask how your doctor would like to entertain information on health issues captured from the web. Ask “should I summarize my concerns and then bring in my notes or photocopied sources?” or inquire if you should provide a synopsis via email before your visit.

The key in doing this before you reach your doctor is that you will make clear your expectations and provide ample notice for your doctor to jump into the conversation with parameters or helpful formatting requests (e.g. frame your question and indicate what led to your concern or confusion). It also psychologically informs your doctor that you are an active researching e-patient. This helps the doctor in giving you “homework” by suggesting better sources to self-educate.

If you have a disease condition or a specific disease-related question, ask your doctor how s/he wants to field your questions when they spring from health info online. Write down exactly what your question is and have mercy on your doctor by not bringing in every print out from the Internet. Highlight the passages in the material that triggered your question.

You might also suggest creating a “virtual basket” where non-urgent queries may be sent to the doctor before annual check-up appointments. For healthier patients who don’t see their doctor very regularly, they might not have an opportunity to raise topics of interest triggered by online articles. For example, the online literature is all over the map on whether a women over 40 should have a mammogram. If a woman over 40 is healthy and doesn’t have a medical need to spur a doctor’s visit, she may not have a chance to discuss this topic and other screenings she should be considering. By banking questions away for the next check-up, this approach allows the healthy patient a way to stay connected and establish a relevant medical dialogue.

As patients continue to reach for answers online, it is time we as patients and physicians used this medium to build better health care collaboratively.

One Physician’s Perspective (Dr. M. Ryan)
Doctor/patient relationships are complicated, dynamic, and unique.  Therefore, I am hesitant to make any general statements about how physicians feel about patients’ providing research or information found in online searches.  Similarly, I am not sure how widespread my opinion is among my colleagues.  These are my thoughts about the use of patient-provided information as well as the problems and challenges I anticipate might arise.

Clearly, not all information available online is reliable.  Studies have indicated that the sponsored links that appear at the top of search pages are often inaccurate.  At the same time, even accurate information might not relate directly to any one patient’s condition or care.  Therefore, all information found online during patients’ searches must be viewed as possibly useful or relevant, not definitively so.

I believe deeply and strongly that medical care is best and most effective when patients are informed and empowered participants in their own care.  As a physician, it is very difficult to provide care to patients who are disinterested or who have a poor understanding of their medical conditions.  Patients who have the desire to learn more about their care are likely to be more willing to take necessary action to improve their health and are more likely to adhere to agreed-upon plans of care.

At the same time, it is not as easy as saying, “Bring in your information and we will review it together.”  Physicians face myriad time pressures and competing responsibilities.  The 15-20 minute visit you schedule with your provider is expected to include your registration, nursing intake, physician visit (history and physical exam), negotiating a plan of care, writing prescriptions and referrals, arranging follow-up care and writing the visit note.  If you have ever wondered why physicians run late, this is one big part of the answer. A physician’s face-to-face time with a patient amounts to maybe 7-10 minutes of the visit, if physicians are to stay on-schedule.  At the same time, health care providers make and return phone calls, review labs, deal with insurance companies and pharmacy benefit plans.  Any additional topic of discussion, therefore, becomes another task requiring time and attention.  If your visit is supposed to cover your high blood pressure and diabetes, a deliberate review and discussion of patient-provided research becomes one more task that needs to be balanced within that 7-10 minute window.  That is a very difficult task, and is one reason why so many providers balk when patients bring in on-line information to review: not because the information might not be valuable or reasonable, but because of the time commitment.

Similarly, review of patient-provided information is made more difficult by the nature of our current health care delivery and payment systems.  Physician payments are determined by the insurance company contracts they sign, and cognitive specialties (such as family medicine, general internal medicine, and pediatrics—primary care specialties) are reimbursed much less than interventional specialties (such as surgery, gastroenterology, etc).  As reimbursements lag and office costs increase, more and more providers feel the pressure to bring in additional income.  If a provider is in a cognitive specialty, the most obvious answer is to increase the number of patients seen daily, with less time allotted for each patient.  Furthermore, providers cannot usually be reimbursed for non-face-to-face care such as telephone conversations or e-mails.  In this setting, a detailed discussion of patient-provided information is even more difficult.  Until our healthcare delivery and payment systems adequately value face-to-face, patient-centered care, physicians and patients will continue to face significant obstacles to forming effective, mutually rewarding relationships that empower patients and enhance care.

The financial motivation noted above as a reason providers should consider patient-provided information–that doing so will affect costs of care)–is unlikely to motivate an individual provider very much.  The cost savings are likely to be systems-wide, and might benefit insurers and other payers by reducing tests and referrals.  This will provide no clear financial benefit to the individual provider.  In fact, the provider might end up bearing more costs: if a patient’s visit takes longer because of reviewing online information that patient provided, the provider may either have to see fewer patients or deal with patients upset that the provider is running behind schedule.

In light of these concerns, here are my suggestions to make patient-provided information helpful for all parties involved:

  • If you plan to bring information in for review, it helps if your provider knows about this ahead of time and has a chance to review the information before your appointment—ideally a week or two in advance.
  • Provide your doctor the information you have found from the perspective of informing discussion, not as a prescriptive request/demand.  The information you found might not be accurate, or might not be relevant to your particular situation.  Providers need to factor in any other illnesses you might have, your other medications, etc., when considering your information’s value.  Additionally, physicians (for better or worse) are very protective of our professional status and responsibilities. Trying to force your physician to do something you want (as opposed to discussing the options) can make your physician defensive, and may result in an end to effective communication.
  • Schedule an appointment if you have significant information to review.  You might think you have a simple question: should a woman over 40 have a mammogram?  The answer, though, is complicated: what is your family history, what is your individual medical history, what is your personal risk of breast cancer?  These factors are individualized, and will take some work for your provider to answer.  If the information you have is going to take your provider a considerable amount of time, requiring a meaningful amount of work, then it seems only fair to set up a visit to discuss in further detail.
  • Let your provider know early on in the doctor/patient relationship that you would like him to consider the  information you provide when negotiating your plan of care.  Figure out the ground rules for your provider, and ask how he would prefer to review the information you bring.  If the provider is not willing to discuss this, then consider finding another provider (if possible). There is no sense in beating heads together over this if there is no likelihood of resolution.
  • Be brief.  Give your provider a short synopsis of why this information is valuable to you, and ask his opinion.  Offer to leave the information for review (if you were unable to provide it ahead of time) and to discuss further at your next visit.
  • Be respectful.  If your provider does not think your information is helpful, don’t try to strong-arm or convince him.  Ask why he came to that conclusion to better understand the provider’s clinical experience and insight that resulted in his decision.  If you disagree, ask your provider if he might reconsider. Understand that it might take time (and another visit) to make that decision.

I agree with many of the suggestions listed above:  more and more patients are going to be seeking information on their own and this information can enhance care.  However, it is not as simple as it sounds.  For patient-provided information to enhance the doctor/patient relationship, both sides of the relationship need to be considered and the benefits need to accrue to each side.  Provider’s workdays are already full, filled with challenging encounters and competing obligations.  Medical care is more effective when informed and empowered patients participate in their care-related decisions in partnership with empathic and humanistic doctors.  This takes respect, understanding and patience on both sides.  The value of online information will vary and will require that both parties be willing to review and renegotiate its use over time.


[1] Godolphin, W. “Shared Decision Making,” Healthcare Quarterly,  12(Sp) 2009: e186-e190, http://www.longwoods.com/content/20947; see also McLaughlin, D., “Shared Decision Making,” University of St. Thomas, August 2, 2010, http://blogs.stthomas.edu/hphc/2010/08/02/shared-decision-making/; “Patient Preferences in Health Care Decision Making,” http://people.dbmi.columbia.edu/~cmr7001/sdm/html/shared_decision_making.htm; see also Walker, T., “Shared decision making gains recognition as patient-centric care model,” Managed Healthcare Executive, April 1, 2008, http://managedhealthcareexecutive.modernmedicine.com/mhe/Health+Management/Shared-decision-making-gains-recognition-as-patien/ArticleStandard/Article/detail/509178

[2] Politi, M., et al,”The Importance of Communication in Collaborative Decision Making: Facilitating Shared Mind and the Management of Uncertainty,” Journal of Evaluation in Clinical Practice, Sept. 12, 2010, http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2753.2010.01549.x/abstract

[3] 111th Congress (2009-2010) H.R. 3590, Library of Congress, http://www.loc.gov/homepage/connect.html; The purpose of HR3590 is stated as, “The purpose of this section is to facilitate collaborative processes between patients, caregivers or authorized representatives, and clinicians that engages the patient, caregiver or authorized representative in decision making, provides patients, caregivers or authorized representatives with information about trade-offs among treatment options, and facilitates the incorporation of patient preferences and values into the medical plan.”

One Response to The Patient Is In: Sourcing and Verifying Online Information

  1. […] This post was mentioned on Twitter by Carmen Gonzalez, Matthew Katz. Matthew Katz said: RT @crgonzalez: "The Patient Is In" is the latest blog post from M.Dimor, Dr.Ryan and me http://bit.ly/b7KQ3a We tackle how to broach e- … […]

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