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?

Guest Blog: My Patient Safety Journey and a Tribute to Katherine Eileen

This week, I am honored to host a guest post by Dr. Julia Hallisy. Dr. Hallisy is the co-founder of the Empowered Patient Coalition. She writes about her daughter's battle for life and how it formed the basis of her work to advocate for and empower patients.

My daughter lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock. My husband and I knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic.

I promised Kate that I would finish the patient education and empowerment work we started together so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. This was the beginning of my patient safety efforts, including the formation of The Empowered Patient Coalition non-profit organization. My patient safety journey has always been inspired by the strength and wisdom of my late daughter, Katherine Eileen. Kate taught us to search for our happiness, to choose to see the good in people, and to treasure every small kindness, every tender mercy – because there were many.  It was a joy to see the world through Kate’s view and even when her spirit was dampened by debilitating illness, she never let her own pain or sense of fear make her immune to the suffering of others.

Empowering patients to be informed and engaged medical consumers is a pressing and challenging goal for all health care organizations. Our organization provides many innovative consumer education materials, including “The Empowered Patient Hospital Guide for Patients and Families”- a free, innovative resource that offers practical information for the public to use in their quest for medical care that is safe, effective, and patient-centered. The goal of the hospital guide is simple – to present the public with practical tools and information to help navigate the often baffling and confusing world of hospital care.

Our current health care system is finally addressing the need for patients to participate in their medical treatment. While I am excited at the progress we are making, I am also concerned that we are changing the rules of the game and asking patients to step up to the plate without giving them the basic knowledge and skills they need to truly be members of the team. I know first-hand what it feels like to realize that you need to play an integral role in your child’s health care, but then struggle at the bedside because you don’t know the questions to ask or how to get the help you need. I know what it feels like to watch harm reach my child because I was not able to be an effective advocate. I work to share my hard-won lessons so others coming behind me have an easier journey. There is no reason for others to keep doing it the hard way.

When I arrived at my fork in the road and had to decide between a lifetime of anger and sadness and a path of advocacy in honor of Kate’s memory, there was no other choice but to choose Kate’s way. So, every day I work in patient safety efforts because I envision a health care system that will be able to prevent so many of Kate’s struggles, one that will support families when adverse events happen, and one that will include patients and advocates as valuable members of the health care team.

Thank you, Dr. Hallisy, for your courage and for your inspiring work. 

Are you a patient advocate? I would love to speak with you and to feature your story. Please use the comment below or contact me.