Should Patients have access to their Data? Building on the #decisiontree discussion

I recently came across this question in a discussion group on LinkedIn. The question came from a blog post at RegisterPatient.com.

Think about the question for a minute. “Should Patients have access to THEIR data.”

Would we think it strange if the banking industry asked “Should customers have access to their money?”

This goes to the heart of the challenges in Health Care. How can patients be engaged if they DON’T have access to their data.  The response I posted on the LinkedIn group went like this:

The question gets to the heart of the problem in Health Care. 

There is no data without the patient. It is their data. 

In business would we pay consultants to come in to our organization, hand them lots of proprietary information. Let them dig around and then let them keep the data and just tell us “Your business is okay” or “you need to implement this solution” and then they send you an invoice for you to pay. 

Most consulting contracts stipulate that the work done by consultants is the property of the company hiring them. Why isn’t this the case with Health Care?

If we put our faith in Health Information Exchanges we will fail. We have to recognize that the patient is the true integrator. It is just that we haven’t equipped them with the tools to fulfill that Integrator role in an easy, secure but transparent manner. 

Think about it – If you are on vacation or on business abroad and have a medical incident. You are the de facto integrator of health information. 

Until we put the patient at the center and give them ownership of their data we will continue to confront massive complexity in health care driven out of the need to capture consent and provide accountability for what is done with patient data.

Building on the discussions at the #decisiontree event on Friday at the Pew Research Center – The fact that Patients can demand access to their data is the starting point for change. HIPAA rules largely become irrelevant when it is the patient who is deciding what to share and who to share with. This concept is at the core of the success of sites like CureTogether and PatientsLikeMe

Tom Goetz the author of The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine. Made a profound point in his discussion with Susannah Fox. “Health Data is valuable – It is currency.”

When you realize that Health Data is currency and has real value then Patients need to start demanding their data. They have leverage. They can trade their business for their data. We should ask our doctor is they will send us our Health Records after every visit and every test.

When we, as patients, start aggregating our encounter data we will see tools emerge that help us analyze and interpret the data, making it more valuable. We will be able to access our data wherever we are, not just in our local hospital or health system.

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#DecisionTree @TGoetz talking about his book at the Pew Research Center with @SusannahFox

I am at the Pew Research Center listening to a discussion between @SusannahFox and @TGoetz talking about his book – The Decision Tree

If we can get people to share they can get to better outcomes.

We can use Information Technology to create Network Effects. The Internet was created to connect people and groups.

The first step is to share stories.

The next step is to share quantitative observations.

Today is DNA Day – 23andMe is offering a $99 special for today only. Talk about sharing quantitative data.

Patient Empowerment – Exceptional cases make bad rules. Rare Occasions make Bad Rules for all. Your rare circumstance does not make for good policy.
Health Care is the last industry to be changed. Health Care has been locked up in a regulatory maze. This has prevented modernization.The Innovators are coming from different directions – not the traditional health care industry.

Susannah Fox saw different approaches to Health at Health 2.0 Europe where there is more prevalent Universal Health Care. In Europe the establishment is driving Innovation in Health 2.0.

In the USA People are driving innovation out of necessity. Just look at the roots of Cure Together and Patients Like Me.

In Africa the prevalence of simple mobile phones is also driving innovation out of necessity.

Quantified Self Group:
Organized by two editors from Wired Magazine.
This is modeled out of the HomeBrew Computer Club – the roots of the PC industry.

Tracking everything about themselves. This is the early adopter phenomenon. This group has grown in leas than 2 years and are now starting companies that build on their work.

There is something to Quantified Self – It follows other emergent industries.
My Thoughts: This is leading to the world of Sensors and Semantics that will monitor and measure what we do.We will move to implicit measurement from explicit measurement.

Pregnant women are early adopters in this world of self-measurement. The aggregation of this information provides valuable information back to this group. “How do I compare?”

Privacy – An issue that worries a lot of people. HIPAA always rears its head.
HIPAA was passed at a critical juncture in the growth of the internet. It effectively cut Health Care off from the Internet.
There is a loophole in all this. We as individuals can demand our information and once in our control you can choose who you share the information with.

Medical Information is currency. It has value.

What about engaging clinicians in Patient Generated Data?

My Thoughts – This is the big breakthrough in Health Care to control medical spending. If Patient data is accepted and embraced we can spend less on testing.

Q: How do we deal with data anonymization?
Personal Genome Project strikes a new deal where participation in the research gives them access to anything that is learnt from that information.

Q: What about the iPad

A: It is amazing – it strips away a barrier by embracing touch.
Health Care takes a fun technology and makes it a burden. The iPad is a consumer technology. This will change the baseline.

Q: Bottom up health care reform and Consumer Genetic Testing. Direct to Consumer Genetic Testing is one edge of the opportunity.

Genetic testing is an example of bottom up health care reform. Chronic disease management is a better example. People living with chronic disease are the potential engaged consumers that will drive change.

Q: Dealing with Prostate, Diabetes and other diseases – there are opportunities to reach out to communities using simple technologies
A: When talking about health disparities. People often don’t have access to information, good food and time to manage disease. Things are getting simpler and more integrated in to the fabric of our lives. This makes it easier to take advantage of.

We are not illiterate. We are not even statistically illiterate but we are health illiterate because health information is often NOT presented in clear and informative ways.

Calorie Menus, Preventative Services being free – all are good things that reduce anxiety.

Check out more on the DecisionTree http://thedecisiontree.com/blog/