6 posts in the category “Guest post”

What’s your experience with accessing your electronic medical records?

Posted May 17th, 2016 by

Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies.

And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing.

Find out more below about the GAO, this new research project and who to contact if you’d like to participate.

The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a publicly available report. GAO would like to hear directly from consumers to learn about any relevant experiences they may have had in this regard (e.g., viewing health information in an online patient portal, downloading health information into a personal health record app, sending/receiving health information to/from a physician).

If you would like to volunteer to discuss your experiences with GAO, whether positive or negative, please send an email with your first name directly to GAO at HealthInfoAccess@gao.gov by June 7, 2016. GAO will contact you to schedule a short, anonymous telephone interview at your convenience to discuss your experiences.

GAO will NOT collect any personal information during the interview, such as your full name or other identifying information. In addition, GAO will only ask questions about your experiences electronically accessing your health information, not any questions about the nature of your health information itself. Any information GAO collects from consumers will be published in a manner that protects your confidentiality and anonymity.

Let your voice be heard!

 

Share this post on Twitter and help spread the word.


A Q&A with Mara Gaudette, MS, CGC, Teratogen Information Specialist, MotherToBaby

Posted February 8th, 2016 by

MotherToBaby, a service of the non-profit Organization of Teratology Information Specialists (OTIS), is dedicated to providing evidence-based information to mothers, healthcare professionals and the general public about medications and other exposures during pregnancy and while breastfeeding.

Check out our Q&A with Mara Gaudette, a certified genetic counselor with MotherToBaby in California. Mara also counsels women who participate in the MotherToBaby Pregnancy Studies.

Can you tell us more about MotherToBaby? What is your role at the organization?

MotherToBaby is dedicated to providing up-to-date evidence based information on exposures during pregnancy and breastfeeding. Common questions that we receive from women, their families, and health care providers are about over-the-counter or prescription medicines, vitamins and herbal products, alcohol and drugs, vaccines, infections, chemicals, and health conditions that a parent has. Our service is free and confidential. We offer a range of contact options, including phone, email, online chat, and text messaging.

In addition to providing information, MotherToBaby also studies the effects of certain medications and diseases in pregnancy. Our studies involve phone interviews; there are no needles, no medications, and no changes to your normal routine required. These studies add to the knowledge base of the effects of medicines and health conditions during pregnancy, so we can help future moms and babies..

The counselors at MotherToBaby all have specialized training but come from a variety of medical and research backgrounds including genetic counselors, nurses, pharmacists, and doctors. My main role is to respond to questions that we receive by email and online chat; I’ll research the exposure that a person is asking about, and then summarize what is known about the effects of that exposure. This information helps women and health care providers make more informed decisions to ensure a healthy pregnancy and a healthy baby.

How does MotherToBaby help pregnant women living with chronic health conditions?

MotherToBaby helps pregnant women by giving them access to the latest medical data on how their health condition and the medicines used to treat them may or may not affect their pregnancy or their breastfeeding infant. It is not uncommon for women to get lots of advice from their friends and family, the internet, and even strangers, but this advice may not be accurate. We want women to have access to accurate and unbiased information so they can make the best decision for their health and for their baby.

Can you tell us more about the MotherToBaby Pregnancy Studies? What studies is MotherToBaby currently conducting?

We have a variety of studies but one of our main goals is to better understand how autoimmune conditions and the medicines used to treat them affect pregnancy. The autoimmune conditions we are looking at include ankylosing spondylitis, inflammatory bowel disease (Crohn’s Disease and ulcerative colitis), multiple sclerosis, psoriasis, psoriatic arthritis, and rheumatoid arthritis.

Our studies never require a mother-to-be to take a medicine or do anything different from her normal routine. Expectant moms are asked to complete 1-3 phone interviews during pregnancy and at least one phone interview after delivery, and we also ask women to release copies of medical records related to the pregnancy. Most of our studies also involve a free, in-home specialized baby exam by a world-renowned pediatrician.

We follow women who have autoimmune conditions and are taking a specific medicine, women who have the same health condition but are not taking the medicine, and women who neither have the health condition nor are taking the medicine. This better helps us understand both the effects of the medicine itself as well as any effects of the underlying health condition on pregnancy.

From the perspective of a certified genetic counselor, do you have any success stories you’d like to share?

It is not uncommon for both expecting and established parents to worry about their children (even when their babies are in their 30s!). My most rewarding contacts have been when I am able to provide reassuring information during a stressful time. Sometimes misplaced anxiety is due to patients and their doctors relying on the FDA letter category system alone to make a risk assessment (check out our blog on this topic:  http://mothertobaby.org/baby-blog/fda-pregnancy-risk-categories-going-away-for-good/). Other times, undue anxiety is from questionable internet sources of information or from the media highlighting the findings of a single research study instead of looking at all of the available data from all published studies (for example, see our response to recent media coverage of antidepressants in pregnancy: http://mothertobaby.org/news-press/mothertobaby-weighs-antidepressant-pregnancy/). There can be so much misinformation out there. It’s incredibly satisfying and rewarding to put an anxious parent’s mind at ease by providing accurate information!

What advice would you give to women who are pregnant – or trying to get pregnant – but are also living with a chronic health condition?

If you are trying to get pregnant (or just learned you are pregnant), then meeting with your health care providers (both your obstetrician as well as the specialist treating your health condition) is especially important to review your symptoms and the medications you’re taking. Many untreated maternal health conditions (like asthma, diabetes, epilepsy, depression, and inflammatory bowel disease) pose risks to the pregnancy, so never stop or change any medicines without first talking to your doctors.

For anyone trying to get pregnant, taking 400 mcg of folic acid every day is recommended to reduce the chance for specific types of birth defects of the head/spine. It is also recommended that you avoid alcohol, cigarettes, or other recreational drugs. The Centers for Disease Control and Prevention (CDC) has a detailed pregnancy planning checklist to fill out and review with your doctors; you can find this checklist at http://www.cdc.gov/preconception/showyourlove/documents/healthier_baby_me_plan.pdf

We’re so happy to be a partner of MotherToBaby. How do you think MotherToBaby members can benefit from PatientsLikeMe? How can pregnant PatientsLikeMe members living with a chronic condition benefit from MotherToBaby?

We’re very excited about the partnership too! Because many of our MotherToBaby moms and moms-to-be are living with chronic health conditions, PatientsLikeMe would be a wonderful forum for them to share their own experiences and to learn from the experiences of others who have “walked the walk” of a chronic disease. Information sharing and getting support from others is so critical when you’re living with a chronic health condition!

It’s our hope that PatientsLikeMe members who are pregnant, planning a pregnancy, or nursing will find our services helpful in navigating decisions about treatments during pregnancy and breastfeeding. We also hope that those who are pregnant will be willing to share their experience with our MotherToBaby Pregnancy Studies, helping us find better answers for future moms and babies. As the saying goes, “information is power” – but we feel that contributing to that information in order to help future pregnancies is especially empowering for women!

Click here to learn more about MotherToBaby.

Share this post on Twitter and help spread the word.