This is my first post on the R.A.R.E. Blog and I would like to say how honored I am to have been invited to be a contributor. I really admire the mission of this network and hope that I can be valuable in some small way.
As a Rheumatologist, who sees patients with rare diseases I understand firsthand the trials and tribulations that many patients and families go through when dealing with a rare disease. It is hard enough to be sick and even harder still when confusion may surround a diagnosis or treatment plan. Often it can feel like “no one understands, not even your doctor.”
Rare diseases are often hard to diagnose, and even harder to treat and manage. Families will often have to see not just one doctor, but many doctors and specialists throughout a lifetime. This can be burdensome and cumbersome not only for patients and families but also for your doctor to manage.
I would like to provide the readers today with some tips and insights for a smoother doctor’s visit especially when seeing a physician for the first time or for a second opinion.
Being a physician is a little bit like being a detective. A doctor relies on good information and medical data as the “clues” to solving a “mystery” (the diagnosis). Part of the key to solving any “mystery” is good fact finding and data collected in a timely manner.
The health care system today can make this process very difficult. Data can be hard to keep track of when going from doctor to doctor or institution to institution. Medical records can be lost or incomplete, or can even be delayed when transferring between hospitals.
One of the best things any patient advocate can do to take care of their loved one, is to help their doctors organize the “clues” in the “case.”
A physician uses a variety of tools and “clues” when trying to put together a diagnosis and treatment plan for a patient. These “clues” come from a variety of sources. They can take the form of: lab work, radiology images, biopsy reports, medical history, physical exam findings and inputs from other clinicians or specialists.
I can’t tell you how many times patients come to me and stare at me blankly when I ask for their old medical records. They somehow think I can “just look in my computer” and it will all be there… I wish it was that simple.
If their prior “detective work” was done by a different doctor not affiliated with my hospital I have absolutely no record of that information and essentially must start my “detective work” from scratch. This can often mean repeating unnecessary blood work or radiology images or even still…a loss of time for that patient or family in reaching their diagnosis and treatment.
While the country is making strides towards improving the sharing of health data and information by encouraging the adoption of electronic medical records, we still have a lot to do and all of this will take time. The HITECH Act of 2009 is a step in the right direction. This policy will authorize billions of dollars of reimbursement incentives to health care providers who can demonstrate “meaningful use” of electronic health records.
However, in the mean time, I encourage all patients and families to take charge and control of their personal medical information and to share this with their provider. Your doctor will be happy you did and it will make their job, of solving the “mystery” (diagnosis) much easier.
For those of you who are comfortable with technology, I encourage you to look into a variety of personal health records on the market today that can help make managing what seems like mounds of medical paperwork into a few simple electronic files that can be managed with a few clicks. If you are not comfortable with technology, I encourage you to keep diligent paper files that are organized by categories. (For example by: lab work, radiology, pathology etc…) I also urge you to make copies and have back up files available either via paper or scanned electronically. Additionally, should you travel, make sure you pack your records or have access to your records remotely in the event of an emergency.
All of the above can make an already daunting process much simpler for both you and your doctor. Remember that practicing medicine is a little bit like solving a mystery, and doing so with “missing clues” or medical information makes it that much harder. The more you can take control and help your doctor with “clues” and fact finding the more you will accomplish together.

3 thoughts on “Tips to help your doctor put the “Missing Clues” together by Dr. Geeta Nayyar”

  1. Anonymous says:

    Thank you for your thoughtful post Dr. Nayyar – and welcome to the R.A.R.E. Blog! In my post here on June 2 Primary Care and HIT I referred to a number of advances and efforts related to the HITECH Act. Within the post I posed a few questions for providers, as I attempted to relate the different Health Information Exchanges (which are primarily being built with a focus on primary care and emergency care, since mainly driven through Federal systems like Medicare and Medicaid) to the discussions in the rare disease community related to registries. Questions included:
    *Advantages/Disadvantages of a single registry, a network of registries, etc?
    *Would this information be useful for provider education on, say, differential diagnosis?
    *Would the data in these records be useful to doctors trying to coordinate the care of a person with a rare disease?
    *Do current definitions of meaningful use consider the rare diease (ie care coordination, engage patients & families, improve public health, etc)?
    I would love to hear your thoughts on these things. Moreover, your post, in my opinion, calls more attention to the personal health record. The ability for a patient to have some level of ownership of their medical record, and inherent portability of that record. However, many of the personal health records have not seen widespread public support just yet, including Google Health profiles, Microsoft HealthVault and CVS’ Minute Clinic patient portal. If you have worked with any of these:
    *what do you think the strengths or weaknesses have been?
    *What do you think needs to happen to get the public more engaged in personal health maintenance and recordkeeping?

  2. Anonymous says:

    I would also like to point you both to CERNER who is also one of the leading Heatlh IT companies with Electronic Health Record technology being integrated into many hospitals and offices. We are partnering with CERNER related to CRDN’s SOLVE program. It would be really important to get you both involved in this process and in the development of the program for the greater rare disease community. Thanks for your submissions!

  3. Anonymous says:

    Nboice: Thank you for your post. I’m glad to hear a company like Cerner is involving groups like the Childrens Rare Disease networks into their plans. I feel that more provider and patient input is needed as we try to figure out what Health IT can and cannot do to improve the health care system.
    Howard to your comments: Health IT is simply a tool to better improve our current system. The hopes of HIT: EMR, PHR’s, HIE’s that because we will better be able to share and integrate data, we can coordinate and take care of patients better. I believe this will be the case all around, whether when dealing with primary care vs. rare diseases or even acute care settings. Better data is a good thing for everyone. There are also many advantages from a research point of view. Better ability to do analytics, retrospective studies and all kinds of things along with registries.
    With regards to my specific blog post. I thought it would be helpful to help folks understand what doctors are looking for when they go through a chart. Patients can certainly help with the fact finding either through a PHR or just their own method of charting or organizing their families medical information. I believe it’s important whenever possible to be empowered as a user of the health care system, but part of that is better understanding of the system and what your doctor needs. PHRs can be good or bad. It really depends on the system and the user. But at the end of the day, keeping track of your medical records is something everyone should do with or without a PHR. A PHR is simply a tool.
    Health It is still an immature industry/market. Our systems are not comprehensive yet and should be looked to as tools driven by the user, whether a patient or provider. With time and continued insights from the provider and patient community I believe HIT can go very far to improve the patient encounter..but we still have a great deal to learn in this regard.

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