The Right to Share

Jamie-headshot-casualWe do not live our lives alone. We live our lives in collaboration
with others. We communicate our needs and our goals, and together we
work to achieve them. This is exceptionally true for families and
individuals dealing with illness. Whether you’re dealing with
depression, or pain, or perhaps the fear and stigma of HIV, or the
impairment that comes from MS, Parkinson’s or ALS, what helps us the
most is when those around us reach out and share their support and

You would think that your ability to share would be as much your
right as speech, but is it? It’s not clear that is true in healthcare
today, nor is it clear that such a right will be protected tomorrow.
Privacy is also a right – a right to not share what you do not want
shared. It’s a fair and just expectation that the doctors and
clinicians you employ to support you in your illness will not share
your information without your permission. Today, I fear that privacy
has become much more than a right; it has become a goal. When that
happens, people begin to find ways to make it difficult to share in the
name of privacy.

More than once we have been asked by people in the medical system
whether patients are allowed to share information with each other like
they do on PatientsLikeMe.
In fact, in some countries you can read their rules in a certain way
and reasonably deduce that this type of sharing is not allowed. It is
vitally important that we do not let this become a reality in the U.S. 
There are some that would take away your right to share because they do
not believe you are competent to weigh the risks and benefits of
sharing, and make a sound decision. Imagine being forced to sign a
document before you email a friend on PatientsLikeMe with a question
about a symptom? This could be a possible consequence of ill
intentioned privacy legislation.

We are working to ensure that sharing is preserved as a right. We
know that you share with us, and each other, because you trust that we
will do the right thing with that knowledge. At PatientsLikeMe, we are
working hard to ensure we earn your trust every step of the way. To do
this, we focus our energies on ways to help discover new things about
each disease here and support the research system. We do this in the
spirit of openness espoused in our Openness Philosophy. We work to be transparent
about our business model and our decisions, and try to be accessible to
you to answer your questions as you participate in our communities.

It remains our hope that you are wowed like we are about what is
possible when we work together to make our healthcare system, and our
lives, better. We have seen so much healing between all of you here on
PatientsLikeMe, and it is because we are all sharing together – not

PatientsLikeMe was recently asked to testify before the U.S. Department of Health and Human Services National Committee for Vital and Health Statistics
(NCVHS). The NCVHS Subcommittee on Privacy, Confidentiality and
Security is responsible for exploring these aforementioned issues as
they relate to healthcare, and ran a 3-day hearing to spur informative
dialogue about the future of e-healthcare. I was honored to represent
PatientsLikeMe, and the thousands of patient members of our
communities, as I testified on all of our behalf at that hearing.

As I said in the hearing, openness is what is and can help patients.
It’s what matters. We believe in the concept called “The Network
Patient” – an approach that puts patients first by giving you what you
need to know when you need to know it, and empowering you to act on
that information. As members of PatientsLikeMe, you have chosen to
embrace openness and take control of your health. You volunteer your
health information, your experiences, your life – all in an effort to
improve your care, support others, and move research forward.

Here are a few excerpts from our prepared testimony statement that
expand on privacy, openness and the future of our health system.

our experiences at PatientsLikeMe, we know patients are aware of the
issues. They understand and weigh the risks and benefits, and are
intelligently making rational choices about where they are comfortable
sharing information and how their information will be used to help. If
we infringe on this right to share or speak (in the interest of
preventing discrimination), we are preventing the flow of information
and, by our read, acting contrary to the values on which our country
was founded.

Privacy is also more than
a legal concept, it is also a philosophical concept. A modern focus on
privacy as a goal, not as a right, has moved the line to the point that
medicine is slowed, treatments are delayed, and patients die for
failure to have what they need when they need it. We have substituted
real harm for mostly theoretical harm. We would even argue that the
philosophical focus on privacy is a bad thing. We believe that openness
is much more powerful concept than privacy in medicine, and one that
gives patients the power to take control of their health…

We have to begin to work
on building a society that allows the variation in human health and the
variation in human condition, one that allows people to be
philosophically created equal. We need to work on building a society
where information is not used to discriminate, but to assist and
support and improve. Restricting the flow of information will not
advance solving this problem.

This is not a simple
transformation, but we believe it is inevitable. The major privacy
issues are not only about health records, but the invisible trail of
“breadcrumbs” we leave behind us day to day in life. Health is not a
separate concept. It is an integrated concept and, in an integrated
world, we have to decide how to build a society that can handle the
reality that not all are healthy. We need to work together to get the
most productivity and life from all of us.

We believe openness can lead the way to such a society.”

The full testimony is available here and posted to the NCVHS website (along with audio archive
of the 5/20/09 hearing). A transcript will also be made available soon.
These hearings, and of course our blog, are open to the public for
comment on these issues. In the spirit of sharing, please share your
thoughts with us here.

Jamie Heywood is Chairman of PatientsLikeMe,
one of the leading Health 2.0 community sites. Jamie came into health
care trying to find a cure for ALS when his brother Stephen contracted
the disease. Now with his other brother Ben, Jamie is pushing the
boundaries of what patient communities can do. He recently testified on
patient privacy before the National Committee on Vital and Health
Statistics, and this article is what he told members of the
PatientsLikeMe community about that testimony on the PatientsLikeMe blog. We're running it on THCB because we think it's a very valuable addition to the too narrowly focused argument on privacy.

8 replies »

  1. I think privacy is vital for every individual, but there are certain limits which everyone has to follow.
    If a person is infected which HIV and if he is not going to marry then he can keep it secret, but, if he is going to have a partner then he should inform his partner about the infection before having any type of relation that could infect his partner.

  2. I don’t understand what exactly is being protested or advocated here.
    I may be mistaken, but I am not aware of any legislation preventing one from posting their medical information on the web and/or allowing it to be sold to pharmaceutical companies.
    Are we asking for legislation to automate selling of such records, or making the transaction more transparent to the patient?

  3. Hi Jamie;
    I am a longtime reader of THCB and have been interested in you for another reason: my maiden name is also Heywood, rather unusual spelled with an “e” here in the States. I never took the initiative to contact you, but I am wondering whether you have any ancestors from White River Junction, Vermont as my dad did. If interested, you may contact me at clr22182@juno.com.
    And great post, by the way. I agree with your statement that privacy is now being used as a weapon rather than a right.

  4. First I’d like to start by applauding Jamie, David, and the PLM team. The meat of this comment is not intended as an attack of any kind, but rather a suggestion for how to make an already great service even more protective of privacy concerns, in this case, my privacy concerns, because that’s the only perspective from which I can speak with any degree of accuracy.
    PLM is a great service, with excellent capabilities for people who are patients to track metrics and share. They’re doing supernova-type work in getting patients to share data that would otherwise never enter the rarified halls of traditional medical research methodologies. PLM does a bang-up job of mixing commerce and advocacy in a revenue-generating way that allows people who are patients to share invaluable experiential data.
    Enough of the PLM love fest – here’s my suggestion…In the interest of privacy and sharing at will, I’d like to advocate for an ‘opt-out policy’ available for PLM users.
    Disclaimer: I’ve toured the service, read the TOS thoroughly, and viewed demos (working with the Health 2.0 team), but do not have a regularly utilized PLM account.
    Currently, I believe users can’t choose to opt-out of having their self-reported ‘me-trics’ anonymized and sold (biotech, pharma, etc).
    While this is clearly stated in the terms of service at PLM (so most users can see exactly what they’re signing up for), a secondary option, available as a paid service, would be nice.
    Interestingly enough, I would probably DONATE my anonymized research data to the condition-specific advocacy groups of my choice, but currently PLM doesn’t give me that option (not sure if any other companies do either).
    PLM cofounder David Williams was kind and open enough to confirm some of this for me personally this week on Twitter (David, thanks again for your responsiveness!):
    “@jensmccabe PLM members can’t opt out of our exchange model–they join *because* we work with companies investing in new treatments.”6:01 PM Jun 12th from web
    In addition, David shared with us that the vast majority of PLM users encourage the firm to sell their data (see tweet below) which, of course, helps provide the service for them, although they don’t have a share in revenues or receive other reimbursement for data sales. NOTE: Data is anonymized so privacy is indeed protected.
    “@jensmccabe Stat: 20:1. The ratio at which PLM members encourage us to sell the data they share with us with life sciences partners.”
    6:03 PM Jun 12th from web
    Here’s a link to David’s Twitter page: http://twitter.com/DSWIII
    Again, I think PLM is an absolutely invaluable service.
    The only thing missing in my very limited view is the opportunity for users-most of whom apparently wouldn’t choose such an option because they’re pleased with the data transfer as advocacy model-to opt out of this part of the transaction at will.
    Who knows if you’d have any takers? Privacy and security of my health data is, to me, having the widest available number of options about how to share (or not share) this information.
    I hope PLM, and other Health 2.0 companies engaged in data sharing, consider an extended array of options in the future.

  5. Both congress and the administration, treat themselves to a
    top-notch Medical Care Plan that costs them NOTHING at the cost of the tax payers. Arguably, this a a “government health care” system. In his campaign said we would be able to choose the same health care system that Congress gives to themselves. two questions:
    1) Why are Republicans objecting to a “goverment run” Health Care system that they are using now as members
    of congress? Maybe they should switch to private system like the citizens they represent?
    2) No wonder private health care programs are screeming
    holy hell if the have to compete with the same health care program that Congress gives to themselves?
    3) Are we getting a health program “just like” to quote
    President Obama, congress gives to itself? I’m sure Congress wouldn’t stand for health care system like medicare?

  6. Jamie,
    Our organization is also very passionate about the state of healthcare and believe that with good leadership and creativity, health care 2.0 technology can effect imminent changes to the system. Our focus is on group health and finance.
    Please contact me, I would love to get your observations on my company.

  7. Jamie’s presentation at NCVHS was VERY powerful and all the panel members really felt that privacy was discussed at a level they could not have imagined earlier. The interest and surprise was palpable!
    One of the panel members HAD to interrupt Jamie during his testimony and asked him, clearly incredulously, “Do you mean that ALL the data on PatientsLikeMe is self-reported??”
    A unforgettable moment! Now, let’s transform this moment into a long term reality!
    Informed patients are indeed aware of the privacy issues and are able to decide by themselves what they are willing to share. The rigid and rather drastic current rules and regulations are clearly a remnant of the paternalistic model of medicine where it was always assumed that professionals know better. It is time to let go of these antiquated control systems.

  8. “More than once we have been asked by people in the medical system whether patients are allowed to share information with each other like they do on PatientsLikeMe. In fact, in some countries you can read their rules in a certain way and reasonably deduce that this type of sharing is not allowed. It is vitally important that we do not let this become a reality in the U.S. There are some that would take away your right to share because they do not believe you are competent to weigh the risks and benefits of sharing, and make a sound decision.”
    Who are these “some”, and what rules in what countries is made reference to?