Patient Engagement in COVID Times: Looking Behind the Numbers

Lode Dewulf

atients have been asking to be heard and engaged for decades. More recently, their call has been echoed by academics and providers. Today, Patient Engagement in the development, launch, and use of medicines has become an accepted necessity. Indeed, the historical risk of engaging patients has been surpassed by the future risk of not engaging patients.

And then COVID happened…

The Problem

In some ways, the necessary public health measures taken in the face of the global pandemic have effectively been a slap in the face of Patient Engagement. In the interest of population health, even survival, decision makers have prioritized treating the statistics. “We need to flatten the curve” became the overriding goal in many countries—and decisions were made by scientists and politicians, almost always without involving those concerned. Fortunately, today the numbers show that the science-driven approach, when indeed applied, works and has in fact saved tens or hundreds of thousands of lives. So, I will definitely not argue against those science-driven measures, which I support and implement.

But individual patients have been paying and continue to pay the price.

For people with COVID-19 within a viable healthcare system, the same fixed regimen is applied to all, from intake to intensive care, to the recovery ward or a zippered body bag. There is no time or resource to individualize disease management to a person’s situation or need. There is not enough time or even resources available to listen. These patients are without their loved ones as they gasp for air, fight for their life, and lose the battle. Their loved ones cannot visit, they cannot see or bury their deceased, and they cannot mourn together.

For people with a medical issue other than COVID-19, the healthcare system suddenly became unavailable in most countries as all resources needed to be mobilized and dedicated to treating patients with COVID-19 and to protecting the general population. Over time we will learn how much mortality and morbidity has resulted from this (necessary) deprioritization of non-COVID-19 pathology. The dramatic drop in healthcare system access, combined with people’s fear to access a facility that is potentially infected, undoubtedly has caused many missed or delayed diagnoses or treatments of cancers, heart disease, and many other medical conditions. In addition, anxiety and depression are up significantly in both frequency and severity (in the US, for example, by at least 20 percent), with researchers and clinicians calling for an urgent global action plan to prevent and counter an expected rise in suicide rates.

All these consequences have two things in common: first, they have been truly unavoidable given the situation, and second, Patient Engagement has been entirely absent in making and implementing decisions. At a time when healthcare was moving from patient to person, COVID-19 kicked us back from patient to subject, or even object. The obvious reason for this retrenchment is that Patient Engagement was in fact not yet mature; it was not the standard way of doing things. Hence, it was the first victim of the crisis, quite similar to the “last in, first out” issue that new employees face when their company encounters an unexpected crisis.

In French they say, “A la guerre comme à la guerre.” Exceptional circumstances do require exceptional measures. In a pandemic, like in an individual life threatened by infection, speed is of the essence. This basically excludes the democratic process of debate, reflection, and vote. And today, the available numbers continue to indicate that overall much more harm was prevented than was caused when science-driven actions were taken quickly. So, again, no issue or blame there.

The real issue is whether Patient Engagement will return. Will it become as essential a part of the new (ab)normal, as it was (becoming) pre-COVID-19? Or will decision makers in governments, payers, and providers find convenience and savings in continuing to work and decide for patients without engaging them? It has taken a lot of effort to get Patient Engagement to where it was before this pandemic, so Patient Engagement may not return without a struggle.

There seems to be broad agreement that our future healthcare system will be different from what it was pre-COVID-19, with digitization as a major enabler. Sometime in 2020 (or 2021) we will hopefully have widespread vaccine use and a very different culture and economy. Today we already see more remote doctor visits facilitated by telehealth or telemedicine than ever before, in the same way as in-person meetings have been replaced by video or teleconferences. This is great because it allows for broader participation and higher effectiveness. For years the slogan “Let us bring healthcare to patients rather than the other way around” has been gratuitous. But now this is actually happening, with systems (including systems for remuneration and prescription) adapting rapidly. Remote patient visits can effectively bring more and faster medical care to patients, including to those who previously had the lowest access (such as those who are bed-ridden or who encounter financial, cultural, transportation, or language barriers).

Just a month or so ago, a clinical colleague and friend told me about his positive experience with remote patient visits. It sounded fantastic until he said, “You have no idea how much more efficient I am now that I no longer need to listen to patients.” That same week, a dedicated company colleague made a similar comment: “I am more efficient now, because it is so much easier to disconnect than to get up and leave the room when a meeting runs over or simply is not going anywhere.” Comments like these perfectly capture the imminent risk for Patient Engagement in post-COVID-19 healthcare.

Patient Engagement is a so-called Quadrant 1 activity in what’s known as the “Eisenhower Matrix” (or “Urgent Important Matrix”), because it is both very important and hardly ever urgent. Thus, Patient Engagement is an investment, with a guaranteed positive future return, just like eating healthy, keeping fit, and not smoking. As is the case with all types of investments, the difficulty is that the investment is needed in the present, while the return is expected in the future. We generally prefer the easy present, which is for example why we eat worse, move less, drive faster, and engage less than we know is good for us in the future.

So, if the performance metric for remote doctor (and study) visits becomes short-term cost or time efficiency only, then Patient Engagement may lose a lot of its pre-COVID-19 attention or momentum, especially in a healthcare system that is more financially indebted and strained than ever before.

The Solution

I remain optimistic that COVID-19 will ultimately advance Patient Engagement in healthcare and drug development more than it slows or reverses it. The main reason for my optimism is that we have all been instantly cast into the patient role by COVID-19, and that this experience will help us better realize the need for Patient Engagement. Remember, a patient is someone with a medical condition or risk. Today, we all live with a real risk of being infected by COVID-19 and even dying from it. And, like people with other medical conditions or risks, we are now experiencing first-hand what this means, or at least some common aspects:

  1. Sudden Onset: Our life has changed, unexpectedly and dramatically. We did not see this coming, and by the time we did, absolutely everything had changed.
  2. Pervasiveness: This diagnosis has pervaded every aspect of our life: how we eat, sleep, work, travel, visit, relate. We struggle to talk or think about much else, especially in the early stages of the new situation.
  3. Fear: We now live with this risk constantly. We look differently at what we and others do or say. We struggle to disconnect and want to stay informed of the latest news, even if it scares us. We feel unsure that we will get (or give) the best care when things go wrong.
  4. Disempowerment: We really have no option than to follow the rules imposed on us by this virus and the government. Neither are asking for our input, only for our compliance or adherence. Fake news is all around us, with the reliable sources harder to find or access.
  5. Chronicity: At first, for many of us this was like an acute problem, a broken bone or appendicitis. We were expecting it to be fixed quickly and to move on. We now know that we will have to learn to live with this virus for a considerable time, possibly forever. There are examples in the last decades of how hard it is to completely eradicate an infectious pathogen, and the growing resistance to vaccination is of no help.
  6. Isolation: We feel disconnected not only from other people, but also from the healthcare specialists. We know that they are experts and doing what they can, but they are also too busy to answer our individual questions. We are in fact afraid to bother them and afraid of what they may ask us to do. We feel quite alone with our individual concerns and needs in relation to this risk.
  7. Connection: This risk or issue is not just mine; it is shared and experienced by everyone in my household. People do not fear or have COVID-19; families do. It feels good to talk to people like me. Our COVID fear provides for a common topic or even bond.
  8. Lasting Impact: We know that life will never be the same. Even when things go back to normal, we will not go back. Maybe we will forever avoid that hug or handshake? People who survive COVID-19 intensive care, cancer, or a similarly severe health challenge also never go back to the “old normal.” The only normal is the “new normal.”
  9. Ideas and Actions: We have at least one good tip, idea, or suggestion to improve at least one small aspect of living with this risk. We love to exchange those with people like us, and, at the same time, we do not know how to bring them to the attention of healthcare decision makers, or whether they even care.

All the above experiences have been quite commonly reported among people living with chronic or severe medical conditions or risks. Now, having ourselves experience these feelings, we are probably more likely to appreciate them in others, too. We have also learned from understanding how these same experience concepts can be felt so differently by other people, including within our own household. Again, this should help us stop assuming that we know how others are experiencing their medical issue or risk, and instead seek to listen and understand. Such curiosity and listening are the basis for Patient Engagement.

The second main reason for my optimism about the future of Patient Engagement is that the inevitable digitization of healthcare will also bring with it a better measurement of the true outcomes of that care, both medically and beyond. This will allow us to better capture and understand the long-term benefits of Patient Engagement, which in turn will drive more resources to this important investment.

These two reasons for optimism are on top of the other potential advantages for patients that may come from the COVID-19 crisis, discussed elsewhere. Indeed, many changes implemented (especially telemedicine and virtual study visits) could significantly improve both patient convenience and access, which have been two of the major challenges in healthcare for decades. What we urgently need is to study and quantify the true patient value (or lack thereof) of these measures, before they are simply “turned off” after the crisis. As the COVID-19 crisis keeps reminding us: whatever decision is made, it should indeed be based on data, not on (old) habits or hype.

So, there are good reasons for optimism that, over time, COVID-19 may in fact become a bit of a catalyst for Patient Engagement. It is quite amazing how a small deadly brainless virus particle could turn out to be such a wonderful teacher.

References available upon request.