Including the voice of the patient in healthcare part 1: The patient’s voice at the point of care

Note: This is part 1 of a 2 part series on the voice of the patient.  In this post we will look at the patient’s voice at the point of care.  In the second part we will look at the patient’s voice in organizational decision making.

As we look to build the healthcare system we all deserve, it is important to make sure the voice of the patient is heard loud and clear.  As I wrote in an earlier post titled It’s Time for Democracy in Healthcare a critical element in the transformation of healthcare is giving patients both a voice in their own care and in decision-making in healthcare organizations.  The voices of patients are important because patients know their own bodies better than anyone else.  They have lived in those bodies since they were born.  Patient’s voices are also important because they know what it is like to be a patient whereas providers, caregivers and leaders may only have the perspective from the other side of the bed or desk.

There are a variety of ways healthcare organizations can ensure that each patient’s voice is included during care and treatment.  The simplest and most basic is to ask the patient about his or her preferences for care and treatment.  This may include obtaining a copy of the patient’s advanced directives.  Many healthcare organizations have been doing this fairly well for a number of years.

Giving patients’ access to their open medical record is an important next step.  In this way, healthcare organizations allow patients on a regular basis to see what it happening during their care and treatment in a more immediate way. Not every patient wants to see or read their medical record but they should have access to it.  However, patients likely do not have the knowledge, education or experience to interpret what they read in the medical record. So it is important to have a healthcare professional available to look through the medical record with them.  Additionally, if healthcare providers and caregivers share information with patients as it is happening and give them lab reports and other data as it become available this can streamline the sharing of information further.

Imagine being given a document many hundreds of pages long written partially in a foreign language but not having an interpreter available to help you read through it and then the next day being given a test over the material.  When we give patients’ access to their medical records but don’t help translate the medical language, lab results and other confusing information and then expect them to make an informed decision about their care – that is just what we are doing – but the results can have life and death implications.

Healthcare organizations, caregivers and providers need formalize ways include trusted family members as well because patients are often not in a position to comprehend or remember information that has been shared with them.  The patient’s voice then in not limited to only the patient themselves but is extended to include those family members the patient trusts in their care giving.

Organizations that promote and practice patient-centered care as well as organizations like the Society for Participatory Medicine have long advocated for sharing a patient’s open medical record as well as including the patient in decision making about their own care and treatment.

It is also important that patients and their family members are given access to medical and healthcare information so they can further research and understand their diagnosis and condition so they can make informed decisions about care and treatment.

All of these avenues an open medical record, including trusted family members and providing access to healthcare information are small steps that healthcare organizations can take today to begin the transformation of our healthcare system from the inside. We don’t need to pass legislation or change national or state policy to make these things happen.  Transformation doesn’t have to start in Washington D.C. it can start where you are right now.


Joel High is a healthcare consultant who works with healthcare organizations around the country to assist them in implementing Patient-centered care. He has an MDiv and an MBA. Joel is passionate about creating change in healthcare that impacts the patient experience and brings meaning back to the work of healthcare professionals. He lives in Omaha, NE.

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  • Mark

    I just saw your post and remember this site/study being done. The site is called OpenNotes “The OpenNotes project is demonstrating and evaluating the impact of sharing encounter notes between patients and their primary care physicians (PCPs) online.”

    The data from this study may help to answer the questions you raise and answer the need to help patients understand what the chart and the notes mean. I am big advocate of determining where patients (i.e. learners) reside on their ability to learn and understand. And further what problems that patient is seeking to solve so we can directly speak to their needs.

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