Patient Experience: Are All Patients Created Equal?

As most of you have seen from my tweets I had the opportunity to attend the Patient Experience Conference hosted by the Beryl Institute in Chicago this week. I have a lot of ideas, opinions, and thoughts post conference, so there may be a few posts forthcoming.

The main theme for the conference is obvious, it is patient experience. During one of the sessions, I was speaking to a gentlemen next to me and he share with me that this was truly an eye opening experience.

My response was that I too thought that the content was very good, but in looking around, I wondered where all the patients were seated?

The gentlemen responded and said that is a good question. He then replied and said, “We are all patients. It is everyone in the room.”

I smiled and responded, “I agree. We are patients. But we are also healthcare workers that live and breathe the language, the dialogue, the hierarchy. We inherently know how to work the matrix. We can make it work for ourselves or a loved when if we need.”

So it made me pause and simply ask myself, are all patients created equal?

I know how to make healthcare work for me. A nurse or another colleague may know how to make it work for them. Yet, is it fair to use our voices to define the changes that need to be made in healthcare? Shouldn’t it be those people and communities that do not work inside of healthcare?

If we truly want to make a change, do we not need to take a true outside-in approach versus looking inside-out?

I prefer to know of the stories, successful and not so successful, of those that are new or frequent healthcare, but do not have an insiders knowledge. Those are the users I want to tap into to make the right changes.

What story do you think needs to help reshape the experience within healthcare?

 

As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek

~CancerGeek

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5 responses to “Patient Experience: Are All Patients Created Equal?

  1. The lovely cliche, “We are all patients” is just that. The contrast between the patient experience for someone who knows the language, has a friend who is a specialist, can understand the impact of one type of imaging or a lab value is not the typical patient. Certainly these people who find themselves on the opposite side of the desk, or suddenly are thrust into the role of a caregiver vs a “medical professional”, offer their own colleagues some insight into that new role. But rarely is the newly diagnosed patient, or one who has never “known” how the system works is the patient at the greatest risk.

    Those recent converts to patienthood can be wonderful translators of the dialect and the cultural mores, but without their willingness to change that culture to be more open, to provide ready access to information, and to speak the language of the street, not the hospital, then we will continue to be inefficient in our care of the sick, have poorer individual and community health, and waste incredible sums of money.

  2. I am a former nurse, but that doesn’t mean I know the language now. As a relatively new cancer patient there were questions I didn’t even know to ask. It’s only now – after discovering a community of others with lung cancer – that I can have a rational discussion with my care team about options that I wish I had known about 6 months ago.

  3. Yes and no. The vulnerability of being the patient levels the field, but I agree with you and others commenting that knowing the system can influence the patient experience significantly. How many times I have seen patients stressed out by even figuring out where they are supposed to be or how to prioritize multiple medical conditions. Quite an insightful observation at a conference meant to be for patients– I think about this all the time with the community we engage on twitter: not all patients are as knowledgeable, empowered, or engaged as many I see online.

  4. Great post, great question. Answering depends upon your definition of patienthood. At the level of all patients are fellow human beings, yes. When it comes to capacity for understanding and decision-making, for inclination to take an active role in decision-making the answer is definitely no from my experience. One standardized approach doesn’t work, you have to individualize. And some are more able than others to be directly engaged and empowered.

  5. Thomas McCullough

    I agree with Minerva, how do we get this info out to patients. All post are compelling, however the patient or future patient needs to be informed of this disease,options,sources of treatment, potential outcomes,strategies,clinical trials available and where. I find more info after the fact than B 4. Great job!

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