Access to health information

Access to information for patients and their family members is one of the most important steps in the transformation of the U.S. healthcare system.  Increasingly patients want access to information about their own healthcare.

There may have been a time when individuals passively accepted the physician’s treatment plan but that is no longer the case.

Yesterday, Navigating Cancer published the results of a recent survey of 295 cancer patients which asked about different ways they might engage in their own care plan.  The survey found that 72% of the people who were asked were “interested in using personalized tools and resources to manage their care.” Seventy seven percent wanted access to online educational materials and 74% wanted online access to their medical records.

It is clear to me as a healthcare leader and as a healthcare consumer that we have shifted away from the passive patient era into an era of actively engaged patients.  Patients want access to not only educational materials but also their own health and medical records online so they can review that information when it is convenient to them.  They want to avoid the hoops of going the hospital’s Medical Records office and being charged 10 cents a page to have their medical records printed out.  And others want access to their medical record while they are receiving care.  They don’t want this so they can catch the provider or the organization making a mistake; they want it so they can engage in their own care.

Patient-centered care, one of the core values of Occupy Healthcare, means putting the patient and their family in the driver’s seat for care and treatment.  Patients cannot make informed decisions and actively engage if they don’t have access to real time medical information.  This means that healthcare providers and organizations must step into the 21st century and, like it or not, engage with the patient by providing access to their health information and educational materials.


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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  • Spherical Phil


    I agree, patients want access to information; their medical records and information about any conditions(s) they may have, as well as educational information on what they can do.

    If I may say so though, this is not an “awakening” on the part of the patients who were passive for decades. The attitude that pervaded healthcare providers for decades was; ‘doctor knows best’ don’t bother us with your questions. Besides, you wouldn’t understand anyway.

    How many times have people with critically ill family members in the hospital been told to go home, there is nothing you can do here anyway? Being there with the family is doing something and it allows you to ask questions and intervene, which disrupts the routine of the hospital. Activism (caring and asking questions) about your health or that of your family got you branded as a troublemaker, someone that interferes. Been there experienced that.

    What recourse did patients or families have? Go to another doctor or hospital that would treat you the same?

    What is happening is not a healthcare issue or an awakening on the part of patients, it is a cultural issue where now the average person has access to information that a decade or more ago was off limits to the patient. They have been awakened on all fronts with major societal ramifications not yet realized.

    But here is the new challenge. Burying patients in data from their medical files is not engaging them in their health. How do they, the patient cut through the complexity of the medical data and connect the dots in the information to they can understand and use it? How do they see the whole of their health in context so they can work with healthcare providers to experience the best possible outcomes for them?

    If you want to transform healthcare to truly improve patient outcomes, engage the patient and their family with useable information. Don’t bury patients in medical record data, provide the data in a meaningful manner so the patient and their family can easily and quickly make sense of it so they can know what to do or not to do.

    If you get the patient and healthcare providers on the same page the results will be astounding.

    • JoelHigh


      You are right on with your comments. I don’t think that I ever used the word awakening but I do believe that generationally patients are expecting different kinds of engagement with their providers and the organizations through which they access care. Additionally, I don’t believe the idea is bury people in data but rather to give them access to information that is helpful to them in making informed decisions about their own health. Providers and healthcare organizations need to ensure that medically trained professionals (doctors, nurses, etc.) are available to read through charts and medical information with patients when they need it. We will get healthcare providers and patients on the same page. Healthcare transformation includes partnerships that we haven’t yet experienced.

  • Gail

    I agree that needing the data is not a new issue for patients and I agree they need it in usable form. The question is – how do you make it usable?

    One way is to write it in language that is so plain and simple to understand that everyone can read it. We absolutely have to push for this even though we can see that defining ” plain and simple” is a monumental task.

    Another way is to combine access to the data with access to the professionals who already understand the data. In the senior marketplace, there are geriatric care managers who are trained on the data and on how to navigate through the health care system. Their combined skills serve to educate the patient and family and resolve road blocks in care.

    I believe that patients need both access to data and access to the professionals in order to make informed choices and take charge of their care.

    • JoelHigh

      Gail, you are very right that we need to make data accessible to patients. I think that the challenge of having data written in plain and simple language may be to great as you acknowledge. That is why organizations that promote patient centered care encourage healthcare organizations to have medical professionals available to help patients navigate the medical record. We have a lot of work to do but with perseverance I believe we can provide patients with the information they need and want to truly be partners in healthcare decision making.

  • Spherical Phil

    “No problem can be solved from the same consciousness that created it. We must learn to see the world anew.” Albert Einstein

    I am not sure that the dialogs on this site are asking the right question(s) with regard to what patients want, from their medical records or otherwise. What I haven’t seen asked or discussed is what patients really want and more importantly, how the healthcare community can provide what patients want.

    I was in Sausalito last week and had dinner with a neurosurgeon who was very clear, he didn’t want to know anything about a patient except what was directly relevant to the surgery he was about to perform. Patient records are designed to give him what he wants, what he as the surgeon must have to do his job to the best of his ability.

    Patient records and lab reports were designed for healthcare providers to better understand what is going on with a person so corrective action can be taken to ‘fix’ the problem. Patients should absolutely have access to these files.

    But these files, even if written in very plain and simple language don’t answer the real question patients have. Which at the end of the day can be largely summarized by, “How can I (at my age, with my medical conditions, with my finite financial and other resources) enjoy better quality of life?”

    The patient lives with the whole of their life and whatever that is for them they want it to be better. Numbers on a lab report may provide a basis to explain what is going on, even sometimes provide insights into why it is going on. But medical records will not answer their question.

    It may be that healthcare providers need to “see the world anew,” to see the world from the eyes and expectations of the patient before the question of how to provide medical records to the patient can be answered.