Notes on Personal Health Data Panel. Allons-y!

Panelists:Dave Marvit (Fujitsu Laboratories of America), Gordon Bell (Microsoft Research), Linda Branagan (Telemedicine Products, Medweb), and Khaled Hassounah (MedHelp)

The Quantitative Self aka Quantified Self (QS)
Gordon Bell

Started MyLifeBits over 10 years ago. One uses of SenseCam= capture health data. Challenges: privacy and entrenched, structured growth industry. Scanned everything he had in regards to health documents. You can record and keep lots of personal health data digitally now. Need to do wellness monitoring. Recommends a pedometer.

Bringing Personal Health Archiving to the Masses
Khaled Hassounah

MedHelp is the largest online health community (12 million users monthly), leading provider of PHRs and health applications, over 300 active condition specific communities and forums, partnerships with leading medical institutions, over 200 experts responding to users’ questions, and live chats with medical experts.

Community is very important to MedHelp. Three years ago decided to do Personal Health Records (PHR), have patients involved. Built it and no one came.

Why didn’t they come?
People are more interested in managing their health or a medical condition, records and archives are not relevant to most of the population most of the time, and users wanted to share, but privacy is selectively necessary. People want to decide what they want to share and what they want to keep private. To build community, you need to be able to share.

Need to give people something that is relevant to them, right now. Give them a tool they can use now. For example, Birth of a Tracker: Ovulation/Fertility Tracker. Very popular tool and other communities wanted trackers too. Key: need to have instant relevancy and benefits for the people in order for it to be popular. Other trackers created: Mood Tracker, Sleep Tracker, Pain Tracker, etc.. MedHelp has over 50 trackers now.

Make it really easy for people to decide whether they want to make the tracker information public or private. Make it obvious for people instead of hiding options (yay!). 85% of the people choose to make their trackers public.

What We Learned:
Have to focus on the activity, records and archives are foreign concepts, sharing is important and privacy should be an option, and the question that is most important to people is “Am I normal?”

Health Data
Linda Branagan

Electronic Medical Records (EMR) are maintained by your doctors (aka your chart). Governed by HIPAA and stored by healthcare provider.

Personal Health REcords (PHR)

1. Type 1: Patient owned and operated. Online record of interactions with all your healthcare providers. Not covered by HIPPA. Example is Google Health.
2. Type 2. Tethered PHRs (aka “patient window”). Probably not details of your physician encounter, still stored and maintained by healthcare providers, you may have a separate one for each provider, and may be provided by your insurance company. HIPAA applies.
3. Type 3: PHRs. Self-collected data store, created by you, often stored on vendor websites, might incorporate or access via a Type 1 PHR, and some home health monitoring devices will deliver data to a physician’s EMR.

PHRs are not universally embraced by healthcare providers. Worry about correctness, liability, and usefulness. Not universally rejected either because: PHR-using patients are more likely to be participative, engaged, and compliant to treatment, may help avoid duplicate diagnostic tests, can help coordination during a complex episode of care (ex. having difficult diagnosis or if you have a chronic condition and an acute disease/illness), and can assist family/friend advocates.

Take away: First, this was not really a panel at all. This session consisted of three separate presentations and no interactions among the panelists. Interesting information about how people create and use personal health data online. I would have liked to hear discussion among the panelists and have a dialogue with the audience.