4 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!


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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.

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CHSG founder Chris Hannah shares how he tracks cluster headaches on PatientsLikeMe

Posted January 25th, 2016 by

In an interview last June, Chris Hannah, the founder of Cluster Headache Support Group (CHSG), discussed his experience with and thoughts on cluster headaches, clinical trials and more. We recently caught up with Chris to learn how he uses PatientsLikeMe to manage his condition, and the advice he gives to others living with cluster headaches.

1. Chris – we’re so happy to have you as a member of the PatientsLikeMe community. How did you first hear about PatientsLikeMe, and what prompted you to join?

One of our board members, Anita, actually met a PatientsLikeMe representative at a pharma event in Philadelphia. At the time, we were working on a collaborative effort to establish a new patient registry for Cluster Headaches. Frankly, we try to avoid involvement in product development and especially support as that is not our primary function as a non-profit patient-centered organization. Anita raised PatientsLikeMe as a possible better path for that purpose and also for ongoing data collection which was another key objective for us. We set up a meeting right away and found immediately a willingness to work together utilizing the great platform PatientsLikeMe had already developed. The fit was not 100%, but it was close enough and we have been able to easily work around any gaps that did not fit our original requirements. The PatientsLikeMe team has been awesome! We meet regularly and it has become a truly collaborative partnership. We are meeting our needs without the pain of software development and maintenance, and in fact, enjoy the benefits of having an excellent partner in the industry. The PatientsLikeMe platform is robust, flexible, and well-supported. It was a great directional change for CHSG.

2. You’ve told us you use PatientsLikeMe to track your cluster headaches. Can you tell us more about how the site helps you manage your condition?

When we first looked at PatientsLikeMe for managing cluster headaches, it seemed to not match some of the ways we track headaches, such as multiple headache types with multiple incidences per day to track, both good and bad. There is a daily reminder asking how you feel today, and that was a huge benefit…a daily reminder to log our headaches. However, daily is just not frequent enough. Many said it won’t work for headache tracking at first, but what we realized pretty quickly is that there is no limit on the number of entries that can be made in a day. Simply by using the PatientsLikeMe tool, we could quickly – with one or two clicks – log every single incident and also track when we were feeling better. Both are important. We did a test with a small group of cluster headache sufferers to try it out. What they all found was that it worked very well to log each and every headache, pain free times, and even medications taken. The graphs were very telling and some even began to see specific patterns in their day they were not previously aware of. It helped them to adjust their medication timing and actually improve their overall condition.

3. How does the Doctor Visit Sheet (DVS) help keep your doctor up-to-date with what’s been happening in between your visits?

The Doctor Visit Sheet has proven to be a highly valuable tool and is very well received by neurologists at what are typically infrequent visits. They can see the entire history over the prior months including pain tracking, symptom changes, medications, etc. This is a critical component in ongoing treatment plan adjustment for cluster headache and migraine which still do not have effective preventive medications. Medications are often adjusted, new medications tried off-label, etc. With the Dr. Visit Sheet, it is a more informed decision process, and honestly, a better dialog between patient and doctor.

4. What advice would you give others who are living with cluster headaches and are looking for ways to better manage their condition, and connect with others living with cluster headaches?

First and foremost, don’t go it alone. We have great resources and patients just like you to bounce things off of, rant, cry, or shout about being pain free. No one else truly understands your pain or the life you live, but other sufferers truly get it. Join us at chsg.org and PatientsLikeMe! Information, discussion, support, and new research initiatives are all available to you, and you WILL find ways to better cope and reduce the impact of this debilitating condition on your life.

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A Q&A with Alec Mian, CEO of Curelator

Posted December 23rd, 2015 by

Our partners at Curelator Headache enable individuals with migraine to discover their personal triggers, dismiss supposed triggers that are not associated with attacks, and identify factors that reduce the risk of having an attack (“protectors”). Understanding your personal triggers – environmental, physical, or emotional – and how they may be acting in combination to provoke attacks is the first step to taking back control and managing your migraines. Read our Q&A with Curelator CEO, Alec Mian, below.

Q: Alec, you have a background in the biopharmaceutical industry. Can you tell us a little bit about yourself and what drew you to Curelator?

I last worked for a biotech startup called Genmedica Therapeutics in Barcelona, Spain. Genmedica was one of the first companies that targeted the cause of diabetes; one of the major causes is depletion of the insulin-producing beta-cells in the pancreas. In animal testing the Genmedica drugs had some of the best results any of us ever saw. These drugs are now in phase 2 clinical trials in humans. But the truth is – for people with early type 2 diabetes, the disease is actually reversible through dietary changes and exercise – unfortunately only a small percentage of the population actually invoke those changes and avoid pills altogether.

Q: Can you tell us where the concept of Curelator came from?

My goal was to create a Company whose mission is to confer long-term benefits for people with chronic conditions, such as migraine, through a non-pharmaceutical approach.

Curelator was the offspring of two needs. The first need is for a non-pharmaceutical approach that can identify all the factors – habits, environment and diet –  that may influence a migraine attack.

The second need is for a fully individualized technology, one that identifies each individual’s personal factors – not the factors that might be common in a population and irrelevant to the individual. Curelator acknowledges that everybody is different.

Q: Can you explain Visual Migraine Language (VML) and the Individual Trigger and Protector Maps?

Curelator requires each individual to self-report and track their exposure to about 60 factors everyday using a smartphone. We’ve made this an easy 2-3 minute exercise by developing a Visual Migraine Language. It is a fun series of icons representing factors that users can quickly learn and facilitates rapid, game-like data entry.

After 45-90 days of data entry Curelator users generate three highly individualized map:

  • The Protector Map will display all the factors associated with decreased risk of attack.
  • The Trigger Map shows factors associated with increased risk of attack.
  • The No-Association Map lists all the factors that have nothing to do with an individual’s migraines. This is actually quite important since many migraineurs walk around needlessly avoiding a catalogue of things for no good scientific reason.

People usually know a couple of their factors, are surprised by others that they did not suspect and inevitably, they also realize they were avoiding things they had no need to avoid.

Q: How can Curelator help people living with migraines? What does Curelator do with the data submitted by migraine patients? (i.e. research, etc.).

The maps equip our users with the knowledge they need to start changing starting their dietary habits and other behaviors. Early results show that people seem to be reporting a 30-40% decrease in attacks and days with migraines after 3-9 months of use – which is fantastic.

You can view some of our results (generated in collaborative studies with National Headache Foundation and Migraine Trust) in an unusual visualization we call a Population Trigger Map:

Q: Are there any success stories you’d like to share, from either the neurologist or patient perspective?

Many patients thank us for discovering simple things, learning that they can actually eat chocolate or drink red wine again –  before getting their maps they were absolutely convinced that they couldn’t.

We have a very interesting case study with a well-known migraine advocate who is active in our PatientsLikeMe forum and is also a registered nurse, Sharron Murray. She was one of our first testers and Curelator successfully confirmed what she had previously found to influence her attacks – but in three months, not five years. We recently interviewed Sharron and she has also has a very popular migraine site.

Q: What advice would you give to people living with migraine? What do you wish more people knew about migraine?

Anyone with migraine should see a good doctor – preferably a neurologist. We have a free coupon referral program with many neurologists so migraineurs can try out Curelator for free and their data will be part of a large research study we are conducting. They just need to ask their doctor for it.

In terms of educating migraineurs, there is a lot of false information about migraine on the Internet. Please don’t assume that there is such a thing as “common triggers.” This condition affects people quite differently.

Q: We’re very excited to be partnering with you. How do you think those using Curelator will benefit from an online community and health-tracking site like PatientsLikeMe? How can PatientsLikeMe migraine members benefit from Curelator?

PatientsLikeMe is an incredibly valuable place to share the experience of your journey, your trials and errors and to learn from others. But shared information is best if it is scientifically based. Otherwise you’ll lose time and be frustrated chasing red herrings. If you have scientifically generated information about your condition, you have the basis for real progress in terms of managing true triggers and embracing true protectors – and getting back control.

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