Patient Power: Tapping the Most Unused Resource in Healthcare

In 2015, NHS Health Secretary Jeremy Hunt said there was an “inescapable, irreversible shift to patient power that is about to change the face of modern medicine beyond recognition.” He was right that the role of technology and the increased engagement of empowered patients is changing healthcare. Despite this, some healthcare companies still seem resistant to embracing the high-value benefits of patient power.


What is patient power?

There has long been what the New York Times calls a “power gap” between patients and healthcare providers. This has often had a negative impact on the patient’s experience. The power gap, argues cardiologist and author Eric Topol, comes from a long-accepted attitude of authoritarianism in healthcare, as well as overwhelming information asymmetry between doctor and patient. The information asymmetry problem is becoming obsolete as today’s patient is more informed than ever, thanks to the internet and ready access to technology.

Today’s patient is often engaged and empowered. They refuse to accept the old power gap and are asserting their own power. Patient power describes patients who are taking responsibility for their healthcare in powerful new ways. WEGO Health Patient Leader Danny van Leeuwen, who has the unique experience of being a caregiver and a nurse as well as a patient, has written extensively about how he sees the power dynamic in his own healthcare experience. He sees himself as CEO of his team, made up of subcontractors like his doctors and pharmacists and pro bono members like his loved ones.


Patient power: the imagery of a powerful leader vs. a vulnerable patient. – source


When patients have more power, and own more personal responsibility, they see a wealth of positive impacts. Empowered patients often have better health outcomes, according to a study published in the journal Health Education & Behavior. When an empowered patient is at the center of a highly personalized framework, medicine, policy, and public health can work together more seamlessly.


A patient-centered framework can improve health outcomes. – source


Patient action groups have played an invaluable role in raising the profile of certain rare diseases. This has, in turn, helped with funding and has led to huge strides in drug development and drug approvals.


Patient Power and Technology

The role of technology as it relates to patient power cannot be understated. It is the driving force that has helped to eliminate, or at least to lessen, information asymmetry. It has helped patients connect with one another. It helps patients raise awareness and even funding. There are numerous vibrant patient communities online and active on various social networking platforms and apps. This includes Patients Like Me, RareShare, and countless disease-specific groups on Facebook.

WEGO Health takes patient communities one step further, and has amassed a large network of not only patients, but 100,000+ Patient Leaders – these are the advocates, influencers and experts who are able to speak on behalf of their communities. WEGO Health supports their Patient Leader membership with resources, educational content designed to hone leadership skills, paid opportunities, annual award recognition, and connections to forward-thinking companies who are making a positive impact on the industry.

Another patient community, appropriately named Patient Power, works to foster knowledge for both patients and healthcare providers about certain types of cancer. Patient Power’s goal is simple: to help “the cancer patient or survivor and your family through knowledge, to get the best medicine and return to or maintain good health.” This includes working to help patients get a diagnosis, helping fellow patients provide valuable support, and connecting patients with clinical trials when appropriate.


Helping cancer patients through knowledge and connection. – source


Some patient communities are taking crowdsourcing even further. The Lung Cancer Registry not only helps patients through connection and knowledge, but it also actively crowdsources these patients to gather valuable data. The goal for the registry, explains Bonnie J. Addario,  is to see “new discoveries move from the patient to the bench and then back to the patient.” The registry is founded on the idea that patients are the “most important partner in clinical research,” even though many in the cancer research community don’t yet see their value.

Crowdsourcing helped NIH researcher Dr. Kirk Druey with research for the rare disease systemic capillary leak syndrome (SCLS). Thanks to one patient starting a group that has since become the go-to patient resource for those with SCLS, Dr. Druey has been able to gather invaluable data like medical histories and even blood and tissue samples.


Patients as an Underused Resource for Healthcare Companies

It’s clear how patient power is good for patients, but another important way to understand it is to more broadly recognize the incredible value that patients can offer to healthcare. Back in the early 1990s, John C. Goodman and Gerald L. Musgrave published the book Patient Power: Solving America’s Health Care Crisis. The book, along with the Cato Institute’s Patient Power plan, suggested that restoring power and responsibility to the individual healthcare consumer could not only revolutionize healthcare, but it could go so far as to fix all problems within the healthcare system. While suggesting that all problems with a system as complex as healthcare is the responsibility of patients might be a stretch, it is clear that patient power can bring some big positive changes to healthcare.

Patient power in action

As seen with the Lung Cancer Registry, patients are eager to share valuable data when it has the potential to help other patients. Patient crowdsourcing is a largely untapped mine for healthcare companies. Even for the healthcare companies that already turn to patients for market and clinical research, finding these patients can be a challenge. Involving a patient leader to help you engage with patients can be a game changer. In this WEGO Health Experts Case Study, patient leader AJ Avedon helped recruit patients with a rare disease for research interviews. Not only did this lead to valuable interviews, but the patient acquisition cost was 60% lower than it would have been through more traditional channels.

Another way patient power can be used is to help the healthcare company understand what they are doing well and where they are missing the mark. When the patient is your target market, it makes sense to treat them as the valuable partner they are. One way to do this is to bring the patient voice to the table by including them on an advisory board. A research platform for Idiopathic Pulmonary Fibrosis (IPF) used WEGO Health Experts to successfully recruit patients to serve on a virtual advisory board.

In his book, The Patient Will See You Now, Eric Topol imagines a near future where empowered patients and technology will bring democracy to medicine. He believes that smartphones will soon be used to “perform blood tests, medical scans, and even parts of the physical examination.” They will also provide patients with the ability to “gain access to (and even edit) their own medical records and generate their own medical data.”


Will smartphones and patients change the future of medicine? – source


Some of Topol’s vision might seem like something out of a sci-fi novel but many of his predictions about technology really are just around the corner. Silicon Valley is especially invested in how technology and healthcare can intersect. A 2015 panel at South by Southwest® titled Patient Power: A Data and Mobile Health Revolution discussed how mobile devices and data analytics could drastically change medicine.

Healthcare companies can, and should, be thinking very seriously about how they can use technology, especially as a tool to help foster patient power. Does creating an app make sense for you? If so, it would be wise to hire patients to give you feedback and perform usability testing. Can you create or build a better website or online community for patients? Make sure the patient voice is part of this process. Whether you want to gather patient data or market research, or you just want to increase patient education and awareness, empowered patients are ready to help you succeed.

Patients are certainly eager for more access and control. A survey by Accenture of 9,000 adults found that:

  • 82 percent of respondents said they would value the ability to book, change, or cancel appointments online
  • 76 percent of respondents wanted to receive electronic reminders about preventive or follow-up care
  • Over 70 percent felt they should be able to update their own electronic health records with information like any side effects experienced
  • 76 percent of respondents said they should have full access to their electronic health records

The OpenNotes Initiative, started by Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in rural Pennsylvania, and Seattle’s Harborview Medical Center, found that the overwhelming majority of patients experienced significant benefits by having easy access to their medical notes. Specifically, they felt they had a better understanding of their health conditions and a stronger relationship with their healthcare providers. This has ultimately led to improved quality of care and often, better patient outcomes. Today, over 20.5 million patients have access to their notes.


Dr. Peter Elias found that patient power can be an effective tool for change. – source


You may not be able to share absolutely everything with the healthcare consumer, but what data can you share? How can you open the door to patients and show them they are valuable partners?


Closing Thoughts

Without question, patient power is a big part of the future of medicine. The UK’s NHS is going so far as to call the coming years the Patient Power Decade. A few questions now come to mind.

How are you embracing patient power?

Are you helping patients to become more empowered?

How are you recognizing that patients have value to offer your healthcare company?


1 thought on “Patient Power: Tapping the Most Unused Resource in Healthcare

Comments are closed.

Share via
Send this to a friend