From Pituitary World News co-founder J D Faccinetti – A few months ago we published a one-question survey asking our readers their thoughts, experiences and wisdom about today’s technology in their everyday management of pituitary conditions. Specifically, how could today’s technology (i.e. smart phones, electronic records, the ability to teleconference, etc.) be used more effectively in managing their conditions, communications and the overall doctor/patient relationship? We received feedback from all over the US and the world including Canada, Brazil, UK, France, Spain, South Africa, New Zealand, Australia and the Sudan. Thanks a ton to all that participated!
Here are the highlights:
Almost unanimously, all respondents mentioned Electronic Health Records (EHR) initiatives, and the ability of patients to access her or his own information, as a critical factor to manage their conditions.
For many, technology could be a major factor for those who are not close to a pituitary center. Here, teleconferences, perhaps from a primary care physician’s office, would be a major plus.
“I think the greatest thing would be the ability to have teleconferences. I don’t drive and I am also disabled, so it makes things difficult sometimes to get to all the appointments I need to, especially when the specialist isn’t local. If doctors had a set day of appointments for teleconferences it would make check-ups much easier to attend. Especially when the appointment isn’t for anything significant, but more of a ‘how are you doing’ appointment.” Brittany G, Michigan. USA.
One of our readers wrote us from New Zealand with a few issues related to doctor communications that would certainly make things easier regardless of where you live:
“Here in New Zealand we have a National Health System, however our records that are available electronically between hospitals are not available to all Doctors and specialists as far as I can ascertain. I think the major stumbling block is the “Privacy Police”. Surely with agreement from the patient these records should be available to all in the medical field. I agree security may be an issue, but this can be worked on. I have a Medic Alert bracelet that has medical details on the back, it also has a phone number that should be called by ambulance staff, and a number that I understand is my patient number. This should enable medical staff to access my details held in the computer. Not too difficult to get to here, should be just as simple nationally. When I had my macro adenoma removed in June last year I was astounded by the amount of “snail mail” between my neuro, endo and GP and wondered why they just could not email it. My neuro dictates, the secretary prints them all off and then sends them. Ridiculous. Just today I emailed my GPs surgery to ask if they could email me my latest blood tests, had them in about 10 minutes, and now I can decide what I need to follow up on. Too often I find my GP reads them out to me so quickly or glances over them I don’t get the whole picture. I am trying to be responsible for my own health, as my GP is not totally up to speed with my condition. Only his second “Pit Patient” in 25 years.!! Many thanks for your time and efforts to make life easier. Kind regards”
Many people mentioned Smart Phone applications to be able to receive, keep track and avail themselves of their charts whenever and wherever they need them. Most people thought patients would become better educated about their conditions and better able to be their own advocates in their health management. The comment below, I think, clearly illustrates the advantages of using smart phone technology.
“I finally have an Endo that updates MyChart and if I go to a doctor for test I can bring up all the test I just had so she/he doesn’t have to repeat them. I always request all test be sent to PCP. My last Endo would not even tell me my numbers. Many time’s I feel like a ping pong ball with so many specialist, I have PHP, DI, Lupus and many other autoimmune diseases. It would be nice if the everyone was on the same page.”
Telemedicine, that is, the ability to use telecommunications and informatics to provide medical advice, offers great advantages in providing health care access to people. The comments below illustrate some of the key issues as they related to endocrine care and pituitary centers of excellence.
“Telemedicine has a huge role to play in modern medicine. The ability to connect with specialists without the need for long distance travel would be brilliant. Particularly with rare diseases when true specialists are few and far between. It would greatly benefit not only the patient but also the clinicians. Self care using technology is also important. Empowering the patient to monitor their health status using apps and online portals is a technology area that is gradually expanding. And then there is the area of education. Most patients rely on the Internet to find answers to difficult questions and to interact in online communities about their disease. Having a source of reliable information such as the PWN is very important as there is a great deal of mis-information online. Rare pituitary and endocrine diseases can be very isolating and lonely for patients. Everyone knows what cancer is and there is a multitude of support for the cancer suffers – unlike rare diseases. Having the ability to connect with other patients is essential.” Lucy Shieffelbien, New Zealand
…and more on telemedicine:
“I would love to see more ‘tele-medicine’ options. There are few centers of excellence for pituitary patients and having access to ongoing care after an initial ‘in-person’ appointment would be life changing. I would be willing to pay out-of-pocket without insurance reimbursement to establish this type of care. I also think there would be many GP’s that would be interested in sitting in on a tele-medicine session with their patient so they can learn and ask questions as well……although getting 2 docs schedules to jive sounds like the beginning of a ‘knock-knock’ joke.
I’ve been managing panhypopituitarism for 10 yrs and it’s nothing but constant adjustments. I’ve never had all more hormones in the right range at the same time, but I still have hope this can be achieved. I have come to know the power of a medicine ‘tweak’ and how an expert can increase my quality of life with a small dosage or frequency change.
I live in a million plus city, but there’s no one here who is comfortable with all the hormones I have to manage. I have to see one doc for the gonad hormones and another for the thyroid and adrenal hormones, then a second endo for the GH. That’s just sad. I get tired of teaching docs, but have found the best investment of my time has been with GP’s who have enough intellectual curiosity to learn from and with me.
I participate in several online groups and have learned sooooo much from others as well as have received encouragement. The people who live in small town really suffer. It takes much longer for them to be diagnosed correctly and when they do it’s likely that they’ve spent a fortune traveling to getting the help they need. It can be fatal for someone to return home from a pituitary surgery in a different State and not have local support to manage their condition. They suffer on so many levels due to their geographic location….this is what technology was design to do.
I also think there needs to be well thought-out, strategic initiatives to educate GP’s and Endo’s about pituitary diseases. The GP’s need more education to they can at least recognize patterns that could be pituitary related. If there really are as many people with pit tumors as the statistics say, I challenge them to identify the 25% in their practice.
There are only going to be a limited number of neuro-endos, but there needs to be a balance between caring for patients and reproducing yourselves. I don’t know the best ways to reach docs as their time is already precious….but meet them where they already spending time.
I am currently researching how I can partner with someone at our local med school to use my history as a live case study for students. Give them a chance to listen to my story and ask questions. This is all I know to do as a patient to make things better, but would love to hear any other suggestions.” Gina Graf, Indiana, USA
Once again we want to thank all of those who participated. Those we mentioned here in this article, as well as those who provided other input. There were just too many comments to include all. We will make available a transcript of the responses without the corresponding author if anyone would like to read the content. Please contact us.
Stay tuned for more!!
Photo by Maurizio Pesce
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