Patients Are Not An Empty Carriage

In 2014 I gave one of my most important talks, it was at Tedx @HIT in Israel and it was my take on the importance of the patient role in healthcare. Today while working on the maintenance of my blog (www.e-pochonder.com) I stumbled on the text of that talk and thought i should publish it here. Hope you will find it interesting.

In 1998 My father was diagnosed with Aggressive Non Hodgkin Large B cell lymphoma.

I know to tell the exact medical diagnosis, because shortly after that I became the “information officer” of my father's treatment.

I searched online for new research and treatments, talking to other caregivers and patients and even talking to a specialist in a faraway medical center in US. The Internet, which was already a huge part of my life, became a prime source for information and empowerment, and a tool for me to help my father beyond all the care and nights spent at his bedside until his death in 2004.

It is with this personal experience and my professional work in the health and pharmaceutical industry over the last years that I can tell you that today’s patients cope with their conditions and interact with their medical providers in a very different way than ever before.

It is my belief that only with true patient involvement will the current crisis in medical care be solved…

There are many metaphors relating to the relationship between doctors and patients. I would like to offer a new one taken from the History of Israel. Back in the 1950’s the question of the role of the Jewish orthodox community in the army of the new country was a major point of dispute. David Ben Gurion, our first prime minister, came to meet the Rabbi Chazon Ish, the leader of the orthodox community to try to solve the issue.

The story goes that the Chazon Ish tried to convey the difference between secular Zionists and orthodox Jews with a metaphor. He asked Ben Gurion about what would happen if a loaded carriage meets an empty carriage on a bridge. Which of them should move aside? Ben Gurion answered that the empty one should move. This metaphor that claims that orthodox Jews are the full carriage, since they have knowledge, tradition and faith, while secular Zionism in an empty one with nothing to contribute to the Jewish culture has long been an issue for much debate. 

This Metaphor can also be said about the doctor patient relationship. On one side the doctor with the knowledge, title, and sense of “Doctors knows best” is the full carriage. On the other side the patient as a helpless individual who constantly heeds the doctor to tell him what to do – is the empty carriage. Inside the medical establishment, this metaphor causes skewed thinking towards what doctors do and not what patients need. However, the dynamics of this metaphor are now changing. Patients are shifting this equation, and one of the most notable enablers of this change is technology.

The biggest driver behind this change has been the expansion of the Internet, giving wider access to data and breaking down barriers to information. Data published by pew research organization shows that 72% of Americans search the internet for health information. In Israel, data shows that all Israeli net surfers search the internet for health related information. These people can reach almost any information the doctor can reach. In addition, sensors and mobile phones have given the patient data and tools to help manage their illness. Patients are using and developing technology to disrupt the health system and better their experience by creating advanced tools for managing healthcare.

One example Is Maayan Cohen. A few years ago, she has acted as a caregiver for her partner in his fight with cancer.

During his treatment, both of them had to manage a lot data in myriad points of care. Because the information was not centralized, it was difficult, inefficient and time consuming, so Maayan after helping her partner with his successful fight came up with a proposed solution. An app called Hello Doctor. The app allows patients to scan and store all their medical papers turning their stacks of documents into an electronic medical record. This helps to turn their data into material that is actionable and more organized, thus making their encounters with their doctors more efficient. This is just one example of how patients are empowering other patients, helping them to become more engaged in their treatment.

While this is a great first step, this trend needs to go even further. Our medical system should acknowledge that the global crisis over medical treatment cannot be solved without a profound change in the way patients are looked at by their doctors.

Instead of seeing the patient as a “mere client” or as an "empty carriage”, they should be seen as a resource, like Dr. Charles Safran from Harvard said: ‘Patients are the most underutilized resource in healthcare’.

This view and philosophy is growing roots around the world. We hear more and more stories about patients engaging in their treatment, working with their doctors as a team, both participating in the care and healing process.

Like Jena Beck, a young woman living with Type 1 diabetes where her body has stopped manufacturing insulin so she has to take insulin and keep to a strict lifestyle. Jana is constantly learning how to understand better what her blood sugar data is telling her.

She uses techniques like Charnoff faces as a tool to visualize data; With Charnoff faces individual parts, such as nose eyes, ears; and mouth represent values of the variables by their shape, size, placement and orientation. The idea behind using faces is that humans easily recognize faces and notice small changes without difficulty. These models help her understand her data, talk to her doctor about it and together make better decisions about managing her disease. Since last November, Jana has been working for Tidepool a non-profit, open-source effort to build an open data platform along with applications to reduce the burden of dealing with type 1 diabetes.

Just as Jana has taken the initiative with her innovative thinking to take a more active role in managing her illness, organizations involved in health care need to find a way for patients to take part in the process, bringing new ideas and new ways of thinking.

One of these organizations is Nesta, a non-profit organization in the UK trying to promote a concept called "patient powered health" as a way to find solutions for the health care problems in the UK. Their study offers hope saying that Patient powered health could save up to 4.4 billion pounds in healthcare spending. They have already produced a number of projects that have shown promising results.

They are not alone. Even the world-renowned British Medical Journal, acknowledged the patient’s role in changing healthcare.

They have changed their journal extensively to involve patients in the editorial and review process. Even more impressive is how they have altered the demands of those seeking to submit their research to the journal, asking them to involve patients in the research design as well as the process. This is just one-step that we have seen in taking research out of the ivory tower and bringing it back to the people.

It is time for the medical establishment to begin viewing patients not as passive participants in the medical process but as having a key role in improving the healthcare system. Patients are not an empty carriage. They bring added value and insights to the table that should not be ignored. Technology is helping to lead this interaction, empowering both patients and doctors, and hopefully that will revolutionize and heal the healthcare system in the future.

The slides can be found here:

My TEDxHIT talk: Patients are not an empty carriage