13 posts from June, 2012

Learning Your Personal Genetics: An Interview with PGen Study Participant PF Anderson

Posted June 29th, 2012 by

Recently, PatientsLikeMe sent a message to our members about an opportunity to participate in the Impact of Personal Genomics (PGen) Study, led by researchers at Harvard and the University of Michigan.  Each of the 1,000 study participants receives personal genomic testing services at a significantly subsidized discount.  Using a series of surveys, the investigators will then look at the risks and benefits of learning this information.  What, for example, will participants do with their discoveries?  Will they make health behavior changes?  Will they tell anyone – and if so, who?

PGen Study Participant PF Anderson

PatientsLikeMe member PF Anderson decided to not only join the study, which has now reached its maximum enrollment, but to also start a blog about her experience.  Find out why and much more in our interview below.

1.  What led you to participate in the PGen study?

The “why,” for me, had three main drivers. First, I’ve been ill for over a decade, and only recently tracked it down to what appears to be celiac disease, but all the blood tests have come back negative for both celiac and gluten-intolerance or wheat allergy. Second, I am both a medical librarian and an emerging technologies librarian. I firmly believe in supporting research both by doing it and also by serving as a subject when appropriate. This project matches my professional interests in several areas, not the least of which has been an emerging awareness of the essential nature of personal genomics and big data to moving research and discovery forward, especially in the areas of rare diseases. Third, curiosity. My family seems to be packed to the gills with various genetic conditions, and I’ve always thought we’d make an interesting study!

2.  Talk about the decision to blog about the study as well.

Why blog? Because, assuming that this IS an important area for research to change the lives of real people, then it is absolutely critical to educate, inform, and openly dialogue about the risks and benefits of personal genomics. Some people I talk with are quite worried about some aspects, while others aren’t even thinking about potential risks! I’m in the middle. I know there are risks, I’m aware that the benefits we hope for in the long term aren’t here yet, but I believe we have to start somewhere to get where I hope we’re going, and someone has to take the risks to hopefully shift the balance.

I hope that the more of us do this, and talk about it, that this will help other patients and individuals think through why they would or would not want to learn this. Also, while I am enormously impressed with the WeConsent.Us website for its information about the risks and benefits of personal genomics and sharing personal data, there is something about telling a story from a real person in their own words that has more impact. Hopefully my own thoughts and story will enrich what WeConsent.Us is doing.

3.  You recently received your genetic results.  What’s that been like?

Frankly, the results so far have been pretty disappointing. There are two branches of the study, one using the testing service Pathway Genomics, and the other using the testing service 23andMe. Each of the two companies runs saliva scans for different conditions, as well as other information. The primary conditions of interest for me were not included in the scan by Pathway Genomics. The results were interesting, but not very relevant. What was most interesting is that, according to the results, for the flock of conditions that run in my family, I am not at risk for ANY of them, including some I am already diagnosed as having. That seems rather surprising, so I am puzzling this over. I suspect that these are actually related to the core condition [celiac disease] that the scan didn’t include.

A little spit is all it takes.  Pictured here is the sample tube that PGen study participants fill with saliva and send in for testing.

I am also a little worried that if I share my test results with my doctors, and the results show that I “don’t have” or am not at risk for these various conditions that run in my family, that the healthcare team might be less vigilant in monitoring these. Because of worrying about the risks of my healthcare team misunderstanding the results and needing the celiac test, I decided to actually spend my own money on getting the other [23andMe] scan. I’m nervous about the money, but I really feel that the information from the one test is incomplete without the other, and the risks of the incomplete information undermine the value of the original test.

4.  At PatientsLikeMe, you’ve been able to chat with other PGen study participants in the forum.  What have you gained from that?

The forum conversations have been fascinating! It is really interesting seeing what sort of questions other people have, their reasons, their assumptions, the information that they bring to the table. Many of the conversations there have triggered new questions for me, and opportunities to learn more.

5.  If you had to pick one key takeaway from participating, what would it be?

We aren’t “there” yet, but if we ever want to get “there,” we need to start somewhere, and that’s here and now.


PatientsLikeMe Adds Three New Executives to Its Leadership Team

Posted June 28th, 2012 by

New Appointments Cap Active Year, Solidify Team for Strategic Growth

PatientsLikeMe, the leading health data-sharing website, announces the appointment of three new executives to its leadership team.  The company, which recently expanded its website to invite patients with any disease, makes this move to focus on expanding the collection and use of real-world disease knowledge to improve patients’ personal experiences and health outcomes.

PatientsLikeMe President and Co-founder Ben Heywood comments,  “Our new teammates—Michael, Sebastiaan and Jeremy—have the operational and leadership experience we need to help guide our strategic growth. I’m excited about the foundation we have built, and about the positive impact we’ll have on patient care, now and for many years to come.”

The following executives round out the PatientsLikeMe leadership team, led by Heywood and his brother, Co-founder and Chairman Jamie Heywood:

  • Michael Evers, Executive Vice President of Marketing
    A consumer and technology marketing expert, Evers joins the company to spearhead business to business marketing and member acquisition. Before joining PatientsLikeMe, Evers was Global Vice President of Marketing for Artfact, the world’s leading live auction software and services provider, and earlier President of BroadMap, a provider of industry-leading geographic data products. Evers’ geospatial industry experience started at TomTom in 2005, where he was the Global Vice President of Marketing and Business Development for the company’s Tele Atlas business unit. Evers has also held senior positions at Motorola and AOL Time Warner.
  • Sebastiaan Foppema, Executive Vice President of Business Operations
    As lead of the newly-formed Business Operations team at PatientsLikeMe, Foppema manages the business development, client services, research and health data integrity team. Most recently, he served as Senior Vice President of Provider Sales and Operations at NaviNet, a healthcare communication network that connects 70% of U.S. physicians with the leading health plans in the country. Prior to NaviNet, Foppema worked for a number of consulting companies in Europe and the U.S. He also formed a healthcare consulting practice in the Boston area, focused on payers and providers.
  • Jeremy Gilbert, Head of Product
    A seasoned business development and innovation professional with expertise navigating the healthcare value chain, Gilbert leads product strategy and development efforts at PatientsLikeMe. Immediately prior to joining the company, Gilbert was an Engagement Manager at McKinsey & Company’s healthcare practice, where he led strategy and execution projects for Fortune 500 clients. He is also a co-founder of four technology startups, and has invented and launched notable products in e-commerce, mobile and discovery bioinformatics. A true technologist, Gilbert has developed software since the age of seven and spent more than 14,000 career hours in software design and construction.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]