How Can So Many Bright People Not See What I See?

February 4, 2014

Today’s guest post was written by Jean Rexford, Executive Director of the CT Center for Patient Safety and former Connecticut Health Foundation (CT Health) board member.

SmilesHow can so many bright people not see what I see?

Years ago, a PBS special featured how different animals and birds saw the world through their unique set of eyes. Eagles, chameleons, houseflies have a unique lens that allow them to see what they need to so that might survive in a complex world.

I think of this often as I sit at multiple tables, in Connecticut and on national committees.

Why don’t the other people at the table know what I know?

And then I remember the PBS special. It is my job to bring my knowledge of the consumer/patient experience to their attention. Just because I do not have a long bio and am unpublished, does not mean that my perspective is not needed and important.

If I am not there, the patient perspective is simply not heard. While all the industries say they represent the patient, the reality is they do not. We need to be at that table to remind them that healthcare is about us, our needs and not about them.

Now that there is a patient public voice asked to join committees, we must begin to focus our attention on diversity. If people of color and diverse backgrounds sit at that table, the reality of their experience becomes important. Over the years, I have seen an increased appreciation of hearing from new stakeholders; with health care reform, our opportunity is now. We must make the most of it.

What do we bring to the table? Common sense. Researchers can delve deep into data that promises to be of little value to the patient. I do not need any more research into the best hand washing techniques. What I want to know is what is the most effective way to get providers to wash their hands. See my point?  I want healthcare to focus on improving outcomes and safety for all patients.

Another compelling reason to participate is the need for non-conflicted voices. Think about it. Everyone else has skin in the game, so to speak. Yet it is our skin they are making decisions about and we need to be there. As consumers, our costs are increasing. We do not want research dollars to be squandered on irrelevant studies; we do not want care that has not been shown to be effective; we do not want underuse or overuse of tests; we want health interventions that are proven and effective.

That is why we need participation from diverse populations. There are increasing numbers of opportunities to participate in the solution. Are you going to be the one who steps forward?

Staff note from Elizabeth Krause: We are grateful to Jean Rexford for sharing her eloquently-articulated and lived perspectives. Jean came to us recently hoping that CT Health could help recommend Connecticut leaders of color drawn from our Health Leadership Fellows, grantee, and partner networks to increase diversity on national and regional advisory groups that she sits on. We are more than happy to help get diverse leaders that we’ve invested in a place at tables of influence. Contact us if we might be able to help you diversify (we’ll be honest about whether it’s a good fit).  And don’t be surprised if you get a call because we recommended you for an opportunity.

11 Responses to How Can So Many Bright People Not See What I See?

  1. Rebecca Santiago says:

    I agree it is “common sense” that many of us have compelling reasons to be part of decision making process as far as our health and safety is concerned. As a Hispanic registered nurse, it is shocking to hear from some of my colleagues that it is hopeless to speak up about the very issues that even affects some of us personally. How can I effectively help navigate my patient throughout the continuum of care towards wellness if I don’t advocate for myself or as Pat Baker so eloquently stated: “invite myself to the table” to address the disparities and inequities are that indirectly or directly affecting my patients, my friends, and family. It is time to step up-here is mine!

  2. Jean Rexford says:

    I share your frustration when I see passive patients. The complexity of the patient experience, the fractured nature of the current care provided, discourage participation. How do we get people to care? Let’s talk.

  3. Nicolas Martin says:

    He who pays the piper…. Patients rarely pay for their own medical care, so physicians, hospitals, and other staff are not beholden to us. They are beholden to government payment agencies, insurers, medical boards, and the Drug Enforcement Agency. Only in a free market, when consumer dollars rule, are consumers masters of our fates. That boat left the medical dock a half-century ago.

  4. Great piece, Jean. Thanks to CT Health Foundation for posting it. I couldn’t agree with you more about hand washing. With limited funds available for research, we need to focus on important issues that actually move us forward by surfacing new information. The Microbiome Project is an excellent example of ground-breaking research that may have very real implications for patient safety and well-being. The reason why HCWs don’t wash there hands is simple. There’s no sanction for not doing so and many incentives (lack of time, architectural obstacles, etc.) to not do so.

  5. Winnie Tobin says:

    Another compelling reason for more diversity “at the table” is the paucity of research about the relationship between minority communities and patient safety. We know that minorities receive less healthcare, experience poorer outcomes, and die of certain diseases earlier than their white counterparts. MITSS took a look at this complex topic a couple of years ago when we put on “Engaging Minority Communities in Safer Healthcare.” The report can be found here: http://www.mitss.org/EMCISHfinal.pdf

  6. Suzan Shinazy says:

    Thank you for writing this. It addresses the same frustrations that I feel. It is the only industry with the ‘forgotten customer’.

  7. Jean Rexford says:

    Thanks for your thoughtful comments. Clearly the patient voice is needed and you all offer compelling reasons why we need to keep expanding our outreach and growing our networks.

  8. John James says:

    People see what they want to see and they do not want to see that their medical care can be dangerous. Others simply cannot give up the fossilized idea that doctors and hospitals want only to give you healing. Frankly, many have been lucky and received good care. We have to keep shining the light on the harm and focus our efforts so that there will be a groundswell of outrage.

    • Jean Rexford says:

      John, no one has shone a brighter light than yours, Your article establishing the probabability of 220,000 to 440,000 deaths each year – medical error a factor in those deaths – has changed the way many providers look at the seriousness of the problem.

  9. In today’s for-profit healthcare system, the bottom line is profit. This does not align with the altruistic purpose healthcare is originally sought out and believed to be.

    In reading a patient advocacy brochure, (scarce to find) it will state that patients have the right to their records AND the responsibility to know what is in them.

    Yet, in reality, this is made to be very difficult to manage for patients as they do not have a tool.

    The Panda Pages are an effective journaling system made by patients for patients. It simplifies facts and allows information to be stored and retrieved easily. It is lightweight and easy to use. No batteries, wifi, passwords, electrical problems. Just paper and pen.

    Documentation is very valuable. Hospitals are very aware of this fact. Patient portals are not enough and are housing “your” data in “their” system. Patients need to know that their own documentation is considered evidence should they ever go to court.

    Please check out our website. http://www.thepandapagesnetwork.com

  10. Arlene Walsh says:

    Thank you for writing this blog reminding us of the importance of being at the table, representing diversity, and being present letting our voices be heard. I have taken the necessary actions to be included. Bravo!

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