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It seems so natural to place a patient at the center of healthcare. Sure, how else?

And yet, surprising as it may be, the very term “patient-centric healthcare” only emerged at the end of 1980s.

Two major factors drove the trend. The first was a deep dissatisfaction with the paternalistic, doctor- and provider-centric approach that dominated healthcare at the time. The second was the looming anger at the pharmaceutical companies that kept designing protocols for clinical trials of new drugs without taking into account patients’ needs and feedback.

So, what is patient-centric healthcare?

Let Us Serve You

In practice, patient-centric healthcare means many different things; the most important, in my opinion, are the following three:

• Shared decision-making: Patients are seen as informed partners, not just passive recipients of a treatment. To ensure this, healthcare providers present options, explain risks and benefits, and then, (try to) respect patients’ choices and preferences.
• The adoption of the “beyond-the-pill” approach: By using web-based engagement tools — telehealth, wearables, and online portals — patients can monitor their health, access records, and communicate with providers at their convenience.
• Holistic care: Addressing the physical, mental, and social determinants of health; recognizing the role of “external” factors like poverty and food insecurity in overall well-being.

The benefits of this shift are hard to ignore: the patient-centric approach has improved health outcomes, increased patient satisfaction, and paved the way to personalized medicine.

Potentially, it can also reduce healthcare costs as informed patients can avoid unnecessary tests and procedures hereby lowering healthcare expenditures. But, I’m afraid, the jury is still out on this point.

Let Us Represent You Too

Another unmistakable sign of the growing patient-centric healthcare body is the proliferation of the so-called patient advocacy groups, organizations dedicated to supporting individuals living with specific illnesses or health conditions.

Examples of patient advocacy groups include American Cancer Society, American Heart Association, NORD (National Organization for Rare Disorders), and PatientsLikeMe, to name just a few, most prominent groups.

Patient advocacy groups play an important role in various aspects of patient well-being:

• They collect information about specific disorders (symptoms, diagnoses, treatment options, and latest research advancements) and share it with patients, caregivers, and the broader public.
• They offer emotional support, peer-to-peer connections, practical guidance, and resources to navigate the challenges of living with a disorder.
• They contribute to medical research by sharing patient experiences and facilitating data collection that helps improve care for the specific condition. The latter becomes especially important when pharmaceutical companies begin designing clinical trials for the treatment of the disorder.

Implicit in the concept of patient advocacy is a belief that all the decisions made by the patient advocacy groups are made in the interest of patients — and only patients — without being influenced by any other, “external,” considerations.

It was therefore troubling to read a recent report by Public Citizen, a consumer advocacy non-profit, revealing that in 2010–2022, drug companies and their major lobbying group, Pharmaceutical Research and Manufacturers of America (PhRMA), have spent at least $6 billion in grants to more than 20,000 patient advocacy organizations.

In particular, the American Heart Association (AHA) received $8.3 million from Pfizer, the manufacturer of Tafamidis, the most expensive cardiovascular drug ever launched in the United States. In its turn, The American Cancer Society (ACS) received $6 million from AstraZeneca, $4.7 million from Merck, and $3.4 million from Pfizer, all manufacturers of expensive cancer drugs.

The report openly questions the commitment — or even willingness — of AHA and ACS to advocate lower drug prices for the patients they represent.

A disturbing but unavoidable concern.

Winners and Losers

One of the most recognizable activities of patient advocacy groups is lobbying for increased research funding for “their ‘’ disease. While these attempts may seem as having only positive effects — what can be wrong with receiving more R&D money? — it’s worth remembering that the history of patient groups’ involvement in the R&D budgeting process is not without controversy.

Back in the 1980s, the outbreak of AIDS brought to life a voiceful and influential advocacy on behalf of AIDS patients. Having launched an unprecedented in its magnitude public campaign, the AIDS patient advocates succeeded in persuading the U.S. policymakers to shift substantial amounts of NIH funds to HIV/AIDS research.

The powerful infusion of taxpayers’ money helped rapidly identify the origin of the HIV/AIDS epidemics and develop life-saving treatments. Yet many critics bitterly complained that by receiving the amount of NIH funds that wasn’t commensurate with the number of HIV/AIDS patients, the program had siphoned away much needed resources from other, more important, public health needs.

Similar, albeit more muted, criticism has been voiced against generous NIH funding for breast cancer: critics argued that the amount of public money spent on this disease — as a result of active lobbying by dedicated patient groups — was vastly excessive, given the relatively low number of breast cancer patients.

By no means are AIDS and breast cancer exceptions. In fact, they are part of a general trend.

A 2012 study by Rachel Kahn Best of the University of Michigan followed how patient advocacy organizations lobbied Congress for a greater share of NIH funding. Using data on 53 diseases over 19 years, Kahn Best showed that for each $1,000 spent on lobbying for a specific disease, there was an associated $25,000 increase in research funds for this disease the following year.

What is wrong with that, you might ask?

The problem is that the amount of NIH funds allocated for any particular disease was determined not by some objective parameters associated with this disease — burden of disease, for example — but rather by the strength of a corresponding patient advocacy group and the amount of money it had spent on lobbying members of Congress.

And when there are winners, there are losers too.

Kahn Best pointed out that diseases affecting primarily women (except for breast cancer) and African Americans tend to receive lower levels of funding because of weaker lobbying.

Besides, adequate funding isn’t provided for the so-called stigmatized diseases, such as lung and liver cancer, the diseases presumably associated with patients’ “bad behavior” (smoking for lung cancer and alcohol consumption for liver cancer). Year after year, both diseases receive smaller funding than would have been predicted based solely on patient mortality.

Another example of stigmatized diseases are sexually transmitted diseases (STD), viewed by many as a personal problem, not a public health issue. According to a 2016 report by the Kaiser Family Foundation, funding for STD research has been declining for decades. In 2014, the U.S. government spent only $181 million, which was less than 0.1% of the total federal health budget. This funding is significantly lower than the amount spent on other infectious diseases, such as HIV and influenza.

The lack of funding has led to a decline in the development of new diagnostic tests, treatments, and vaccines for STDs. It has also made it more difficult to prevent and control their spread.

…and Orphans

And then, there are “orphans,” diseases for which there are no active patient advocacy groups.

Take, for instance, the group of infectious diseases caused by bacterial and fungal infections.

Most of us at some point in our lives get sick of a disease caused by a bacteria — and many women suffer from vaginal candidiasis caused by Candida, a fungus. But these conditions are normally transient and cured away by antibiotic treatment. As a result, there is no “stable” population of patients for whom a condition is chronic as it’s the case for cardiovascular disease, diabetes, or cancer — and there is no a patient advocacy group to vouch for these patients.

The rise of drug-resistant bacterial and fungal infections represents a serious threat to public health. And yet, our response to this threat is completely inadequate.

Part of this problem lies in the economics of developing and manufacturing antibiotics — a subject of a special conversation. However, the lack of active patient advocacy capable of lobbying for more funding to address the rise of drug-resistant infections doesn’t help, either.

Lobbying is as American as apple pie. Both corporations and large nonprofits spend millions to promote their interest at the federal and state levels.

There is nothing wrong with patient advocacy groups being engaged in lobbying activities, too, for as long as sources of their own funding are transparent.

And yet, as a society, we must develop more efficient mechanisms to properly fund medical research. The allocation of funds must reflect public health priorities, not the political and economic strength of special interests.

There is so much at stake.

(This article was written with the help of Bard, a collaborative AI tool developed by Google.)