What Do Patients Think About Transparency?

Since launch of “Who’s My Doctor” two weeks ago and my blogs in Huffington Post, British Medical Journal, and Psychology Today, I have had a number of queries. Many people want to know what is the reception to it so far. My next blog will address what doctors think about the total transparency initiative. This post focuses on our patients.

Here is what prominent patient advocates have said about this campaign:

Patients and families increasingly understand that health care varies. They want to know about the training, experience and ultimately the quality and outcomes of the doctor's they choose. "Who's My Doctor" and the "Total Transparency Manifesto" are wonderful first steps towards this goal.

--Carol Cronin, Executive Director, Informed Patient Institute

We have a transparency law in Colorado and the intent of the law is for consumers to have access to information about their physicians including conflict of interests so they can make more informed decisions. There is complete transparency regarding all 49 professions under DORA. What Dr. Wen is proposing is just this without having to pass legislation to make it a reality. Bringing to light vital physician information should be a given. Physicians should not allow a conflict of interest to influence their medical judgment. It is a human factor that it does so why not eliminate the temptation. All health professionals have a responsibility to their patients as well as to themselves.
--Patty Skolnik, Executive Director, Citizens for Patient Safety

Trust is vital for relationships. Patients place their trust in their physicians.  We trust the information our clinicians share with us will be free of error, bias and self-interest. Medical journals require disclosure statements and I believe the same standard of transparency must also be provided for patients. Leonard Kish reminds us “data enables decisions.” “Who’s My Doctor?” ensures patients receive the necessary information needed to make informed decisions that impact our health. I support Dr. Wen in her efforts to provide further transparency for patients. I’m passionately supportive of this movement and as a patient advocate have seen the need for this culture change for a long time.

--Lisa Fields, patient advocate and Co-Founder, Healthcare Leader Tweet Chat

Restoring integrity to medicine is a very important project, and I salute Dr. Wen for taking the initiative to start “Who’s My Doctor”. In the 21st century informed patients want to know -- and deserve to know -- if their doctors have any potential conflicts of interest. Commercial values pollute too much medical science and clinical care, but many doctors are independent and put integrity and professional values first. They will be proud to share their information on this website and it can become an important resource.

--Leonore Tiefer, PhD, Co-organizer, Selling Sickness; Convenor, New View Campaign

“Who’s my Doctor” is an innovative campaign that supports providers who want to demonstrate their commitment to integrity and ethics in all patient interactions. The public needs to know that the health care providers they entrust with their lives are free from personal bias and professional conflicts of interest. To date, finding this level of transparency about our providers has been close to impossible. “Who’s my Doctor” is a way for providers to be proactive about the information they share with patients and supportive of patient choices that originate from a foundation of mutual respect and trust.

--Julia Hallisy, D.D.S., Founder, The Empowered Patient Coalition

In the ER, my patients have responded positively to my disclosure. “I had no idea doctors get paid to do more,” some said, while others were surprised: “I thought all doctors got paid by drug companies.” Nobody has said, I wish you didn’t tell me, or why are you explaining this to me. The other doctors who are joining this inaugural campaign report similar anecdotes; you will be hearing their voices on this blog in the coming months.

I’d love to know what you think. Would you use “Who’s My Doctor”? What do you want to know about your doctor?

Calling All Doctors and Announcing New Campaign for Total Transparency

Our healthcare system is broken and in dire need of reform. We all know the statistics: the U.S. spends $2.7 trillion on healthcare, 30% of which is waste in the form of unnecessary tests and unnecessary treatments. Conflicts of interest are rampant, with 94% of doctors reporting an affiliation with a pharmaceutical or device manufacturing company, and many more insidious influences including salaries being tied to “productivity”. Dozens of studies have shown that these conflicts of interest have a real impact on care, and are a major driver of excessive cost and avoidable harm.

On my recent book tour, I discovered an even bigger problem than the cost of care. There is a rampant and growing epidemic that we seldom discuss—the epidemic of fear. It’s understandable why patients are scared when they come to us. They’re not feeling well. They’re scared of what might happen.

But there’s another layer of fear, one that begins and ends with trust. When my mother was diagnosed with metastatic cancer, it took her months to find an oncologist she liked. One day, while trying to locate his office number online, she found a listing for him as a highly-paid consultant and speaker for a drug--the same chemotherapy drug that he’d put her on. This might have still been the right treatment for her, but it made her wonder, and it made her scared.

Traditionally, medicine has maintained a certain mystique. While there has always been information asymmetry, patients and doctors established longstanding relationships, and patients trusted that doctors had their best interests at heart. However, today’s medical landscape is very different. Few patients have longstanding relationships with their doctors. They have little to go on when deciding who to trust with their health, then are kept in the dark on matters ranging from cost of care to doctors’ motivations to necessity of tests and treatments.

In a time when they are already vulnerable and scared, patients have become even more afraid that they may not be receiving the right care for the right reasons. Doctors, too, have become afraid of their patients; much has been written about the fear of malpractice leading to hiding mistakes and practicing defensive medicine.

This mutual fear has led to distrust, disconnection and poor medical care. The driver of fear is secrecy and shame, and the antidote is honesty and transparency. Doctors are public servants whose duty is to be accountable to our patients. We need to break through the barrier of fear by sharing with our patients and the public who we are.

This is why I'm starting a new campaign, “Who’s My Doctor? The Total Transparency Manifesto.” Participating doctors produce a voluntary, public disclosure statement that includes the following: revenue streams of all payments, salary contribution and how salary is determined (i.e. hourly, RVU system, incentive/bonus), paid and unpaid board membership, investments, volunteer activities, professional interests, hobbies, and philosophy of practice.

Doctors already disclose much of this information when they apply for jobs and when they submit to medical journals. So why shouldn’t this information also be available to the public? Our patients have a right to know what influences their doctors may have that affect their care. It holds doctors accountable to our patients while at the same time humanizing us and reinforcing our role as socially responsible public servants.

Many patients may well decide that this information is irrelevant and never look at it. However, it should be available in a public, easily searchable database for those who do think it matters. Patients then have the option of identifying a doctor whose philosophies match their own. They can also help to encourage their doctor to participate in this project. 

Many doctors may have qualms about their information being available in such a public forum. However, in the era of Google and social media, much of this information can already be found online, and having a voluntary disclosure gives more control to the doctor. Also, experience with other transparency pilots such as Open Notes has demonstrated that openness leads to better communication, more trust, and better care, and it only follows that a more open relationship with our patients leads to less fear and less malpractice.

I believe that this form of radical transparency is paradigm changing. It is changing the culture of medicine from one of secrecy and mystery to one that is totally open to patients. It is a public demonstration that patient interests are primary, that reaffirms the reasons why each of us went into medicine. Every time I tell my patient about my decision to be a totally transparent doctor, every time I share my Total Transparency Manifesto, I are saying, I’m your doctor. I’m looking out for you. I’m free of influence that could affect you. Don't be afraid of me; trust me. I’ll be vulnerable with you.

Over the last few weeks, I’ve been discussing this idea with my colleagues and my patients. So far, I have myself and 10 other doctors who are willing to be totally transparent doctors. I’d love to have doctors of all specialties to participate, to say, I’m doing what I can to restore professionalism and break down the barrier of fear.

I’d love to have you join us. What you need to commit to is to write a Total Transparency Manifesto for the website (full website TBA; see more information and my manifesto on my webpage), tell your patients about it, and share your experience with me and the readers on this blog. How did it make you feel. Scared? Uncomfortable? Defensive? Liberated? And how did your patients respond?

And patients—what do you think? Please post your responses. Over the next few months, I’ll be posting my own experiences as well as the experiences of my fellow transparent doctors and our patients. Please join us in this new mission to counter fear and restore trust.