Wednesday, March 20, 2013

That's "patient-driven"

The masthead to this blog states that I am an advocate for patient-driven care.  When I posted that, I heard from a number of people in the health care world that using such language would drive away medical professionals.  "It's OK to talk about patient-centered care," they would say, "but you will alienate people if you demand patient-driven care."

I thought it odd that in a society characterized as "consumer-driven," people would take affront at the concept of this group of people (i.e., patients) having less authority and impact than say, those buying cars, clothes, and food.

I didn't mean that patients should or would be assumed to be world experts in their diseases or symptoms, but that health care providers should treat patients as though they were legitimate partners in the delivery of care.  Further, that doctors and nurses in the health care system would first figure out what patients feel, what they are worried about, and what they want to know before offering their own--no matter how erudite--views of "what is good for the patient."  But I have since learned that I was not going deep enough or broadly enough.

I am so pleased to note a site created by Gilles Frydman entitled, Patient Driven, The Growing Impact of Networked Patients.  If anyone in the world understands the power of patient networks, it is Gilles, who was the organizing force behind ACOR (Association of Cancer Online Resources).

ACOR is a patient-driven set of online communities. As noted: "ACOR online communities are for parents, caregivers, family members, and friends to discuss clinical and nonclinical issues and advances pertaining to all forms of a specific disease. This includes patient and caregiver experiences, psychosocial issues, new research, clinical trials, long-term side effects and discussions of current treatment practices."

In a recent post on the Patient Driven site, Gilles notes:

For someone like me, witnessing daily how large numbers of well informed cancer patients communicate with others, including peers and health care professionals, in order to get the quality of care they deserve but rarely get, the notion of an engaged patient is clear and simple. It is, simply dramatic shift away from the paternalistic old model of medicine where “doctors know best”.

So far so good, but then, look how he digs in deeper:

An engaged patient is someone deeply involved in the scientific understanding of their disease, fully aware at all times of the entire spectrum of available therapeutic options. It requires a set of learning, cognitive and psycho-social tools that can only be acquired by conversing often with a real network of peers who are similarly involved in this complex endeavor. Because most of the communities where these activities take place are either hidden or hard to find (due to privacy concerns), the health care world is usually unaware of the depth of experience demonstrated daily by these groups.

But there is more, as Gilles urges us to consider:

[A] world of truly engaged patients who collectively and constantly cull anything published about their disease, create centralized tissue banks to generate advances & scientific discoveries and do all the activities necessary to maintain a network of microexperts.

The latter term refers back to a December post of that title by Roni Zeiger:

I’m convinced that our next exponential leap in medical progress depends on us learning from networks of microexperts.  Today when I see patients, for example, I’m often not sure what the right diagnosis or treatment is.  I may look something up, ask a nearby colleague, or if I’m really unsure, I’ll refer the patient to someone more expert.  I often don’t do this because both the patient and I want a decision sooner and because the ‘expert’ is also imperfect.

Imagine if I summarized the question in a couple sentences +/- a photo, and it was immediately posed to 100 potential experts in my network, who are chosen on a per-question basis using a relatively simple algorithm that matches my question to their experience.  Building this system would require significant innovation in how groups of doctors collaborate, but from a technology perspective we could easily build this system today.  It’s clear to me that in ten years, I’ll look back on how I’m practicing medicine today, and be embarrassed at how often I settle for poorly informed decisions.

Patients, no surprise, have already begun to figure this out.  A well-functioning online patient community is a network of microexperts.  For example, a few might have a background in statistics and have learned how to interpret the results of clinical trials.  Others have the resources to travel to centers of excellence for their relatively rare cancer and bring back to the community what they learn.  Many of them read everything they can find, share potentially useful findings, ask each other questions, and discuss potential answers.  And the best communities have a few members who are skilled at recognizing key insights brought by those who happen to be the microexperts for a given question.  It’s time to learn more from networks of microexperts!

Gilles' and Roni's formulation takes my casual use of the term "patient-driven care" to new heights. I suggest we all keep an eye on these two colleagues and see how they transform this concept into something new and better.

For now, my good friend Ana offers a visual depiction of things to come:


Mk Sheikh said...

From Facebook:

I think crowdsourcing what Ziegler calls "networks of microexperts" is a great idea. A concept like twitter can provide a template as to how to connect providers with the best match for their query, while also providing speed of decision making.

Marlena Baraf said...

From Facebook:

Paul, I've seen a striking example of this when a cousin of my husband (an MD who was suffering from a soft tissue cancer developed a website where patients w/same disease wd exchange information. She led the charge in exploring the latest treatments, was bluntly honest. Her name was Doreen Kossove. She died about 3 years ago. Sloan Kettering linked her website to their pages. She helped so many. In fact, they helped one another. Striking and effective. said...

As the parent of a child with multiple chronic complex needs, not just medical but cognitive, social, emotional and behavioral, "driven" versus "centered" to me acknowledges that ultimately, I'm the one who has to have the situational awareness of what my son needs at any given time, identify the right partners, prioritize the interventions (because we just can't implement it all). It took me a long time to figure out that I am in the driver's seat, but now that I'm here, I can't imagine why any provider would argue that they can do this instead of me.

If I had one more linguistic change to make, it would be to swap out "patient" for "person". Only in the medical world is my son a patient. His care and well-being needs span multiple domains. And I'm the one making sure that everyone sees him as a person first.

Eleanor Newton said...

It is true times are changing, albeit for the better! It is essential to recognise the overwhelming number of people that now take to social media sites and blog forums to communicate. As well as appreciate the access the internet allows to different cultures and walks of life. The way in which people communicate is changing day by day and whos to say that the patient care system shouldnt change to keep up with this. A patients priority is their wellbeing as well as it being the priority of their loved ones. This unconditional devotion and dedication to source cures and coping methods go to lengths that far out do any medical practioners. The priority and love cannot compare. This meaning that patients drive should be shared between others suffering. A community of patient driven care could be the answer to quickly trialling and finding out what works for an individual, first hand experiences are valuable second to none. In the UK patient care standards are slipping with more and more stories of neglect hitting the media. Something needs to be done to restore faith in the NHS and perhaps patient driven communities are the answer. A support network, an agreement to go hand in hand with medical practitioners to learn about their illness in a bid to help those in the future. The NHS's conflicting promises of high levels of patient care are not a reality. I would love to hear your opinions of this issue on my most recent blog post and the benefits of patient driven care. //