The Ethics of Pharma-Patient Relationships

It was fortuitous timing this week when I received an email from Denise Sibler, head of Basil Strategies and coordinator of the Doctors 2.0 & You conference in Paris, asking my opinion on the issue of ethics in patient-pharma relations.

"I can't identify a time when I wasn't interested in the ethical issues of health care and one of them is the pharma-patient relationship," Sibler said. "With the rise of the ePatient, many interactions and relations become possible, so new questions have arisen."

I'd just come from HealthCamp Kansas City where myself and three other patients were fortunate to be able to participate in a conversation with members of Eli Lilly's Open Innovation Team. Team members were seeking input on how to improve the clinical trial process by crowdsourcing ideas. Their focus was not simply on R&D but on the patient experience. Overall, the patient group's suggestions echoed those I heard during a similar conversation with a representative from Pfizer while at HealthCamp DC in June regarding increasing patient participation in clinical trials—share the data and show patients their involvement matters. It is never unethical to have a conversation. Only through open dialogue can we begin to understand one another's view points, and that goes for the relationship between pharma and patients as well.

Patients enter trials not simply for themselves but to help others with their disease and advance scientific discoveries. Patients consequently should be allowed to learn along with researchers. What information about a patient is learned during the course of a trial should be shared with the patient—good or bad. If a trial succeeds, patients should be informed of the immediate results and continued to be kept aware of the long-term impacts of the trial. When a trial fails, patients should be informed as to the reasons why and how those reasons will play into future trials in terms of revamping, improving, or altogether abandoning a treatment or device.

The issue is, at its heart, one of transparency. Patients are not stupid. Anyone familiar with the scientific method knows that a hypothesis must be tested before a conclusion can be reached and there are inherent risks in the process. Testing a hypothesis results in a certain degree of failure; however, a conclusion always is reached, and therefore failure to prove a hypothesis is not a failure to learn. We incorporate our gained knowledge into the development of a new hypothesis, and go on to the next phase of testing.

As for what is not ethical, my opinion is highly influenced by my personal needs. Historically there has been little market to motivate pharma to invest in developing drugs to treat rare diseases. Small patient populations don't haven't had the ROI of drug development for alzheimer's or diabetes. Changes are happening in this field. A May 2, 2012 report from Forbes states, "A great example is Genzyme’s Cerezyme for the treatment of Gaucher disease, a genetic disorder that impacts organ function. Cerezyme is extremely effective – but it is also extremely expensive with annual treatment costs as high as $300,000/patient. As a result of this high price, Cerezyme’s 2010 sales were over $700 million – a respectable number for any drug." Such changes don't give me any sense of hope for a treatment within my lifetime. How pharma could potentially address this disparity is by developing off-label uses for existing drugs with clinical trials involving similar diseases and targeting patients' chief symptomatic complaints—pain, nausea, headaches, etc. For many patients, being able to effectively treat a major symptom would do enough to improve their quality of life that the wait for a cure would become less torturous. Truly implementing off-label use would require overhaul within the insurance industry such that clearly beneficial off-label use is covered just the same as an antibiotic. The healthcare industry's continued failure to address the rare disease community's needs is no small matter, as rare diseases effect more than 30 million Americans.

Furthermore, pharma marketing absolutely must be revamped. While I am a firm believer in the engaged patient and participatory medicine, prescription drug interactions are not within the common patient's frame of knowledge. Marketing directly to the patient—at least in the manner in which it is done in the U.S.—and commanding that patients "ask your doctor about" prescription X, Y or Z is out of line and a sure sign of pharma's nature to prey on patients' desire for a cure to their disease. This methodology also is a disservice to healthcare providers who presumptively have more knowledge of the drug, its interactions, and the patient's condition when that healthcare provider determines that the drug is not appropriate for the patient and the patient subsequently blames the provider for a failure to provide care. The flip side of this is, of course, that marketing directly to providers may sway the providers' choice of medicines. While medicines come with a set list of possible side effects, each patient is an individual. A patient may have demonstrated adverse reactions to a drug, yet a provider unfamiliar with that patient may go against the patient's assertions that medicine x—though not new and shiny and expensive—really truly works better for him or her than medicine y.

We must ultimately remember that pharma and healthcare in general has turned the matter of life or death into a series of business decisions. Only when we put what is best for the patient—with respect and consideration for each patient as an individual—back at the forefront will we be able to actually effect change and engage in the true meaning of the word healthcare.

Examining this issue further is an extension of the Doctors 2.0 & You mission.

"Doctors 2.0 & You is a forum for exchange amongst healthcare's stakeholders internationally," Sibler said. The Doctors 2.0 & You manifesto was about all healthcare and fighting for better care in general. The next step is to drill down into specific issues."

In order to do so, Sibler will be working in conjunction with ePatients like myself in order to collect additional information about ethics in patient-pharma relations with the intent of issuing a report on the group's findings.

#HCSM Review - Sept. 19 Edition

The HCSM Review is a peer-reviewed blog carnival for everyone interested in health care social media. This edition is loosely based on the theme of motivation and how it plays into our roles as patients, providers and caregivers. 

Motivational Lessons
"I look back now and wonder how my working self would assess my own motivation and participation over the last few years. On a good day I'd be the perfect patient, self-motivated, engaged, determined. On a bad day I'd be the surly, non-compliant patient threatening to throw a cup (or worse) at my head. It's just luck of the draw." - Rusty Hoe, Living With Bob (Dysautonomia)

Lather Up: doctors resistant to patients’ requests for hand-washing

"As patients we need to learn to work with what is until doctors and nurses are more accustomed to working in partnership with patients." - Martine Ehrenclou

Blogging and the Experience of Cancer Survivorship
"The apparent randomness of a cancer diagnosis shakes your sense of identity to its very core and afterwards nothing will ever feel certain again. Friends and family may find it hard to comprehend why you are sad or depressed. Understandably your loved ones want you to put your cancer behind you, to get on with your life and move forward, but it isn’t so easy." - Marie Ennis O'Connor, Health Care Social Media Monitor

Other favorites from this week's blogosphere:

Patient Satisfaction: It Is Not Just About Marketing

"Patient satisfaction can be broken down simply into two main issues… expectations and perceptions. Patients enter your office with a perception of the care or interaction they desire. They then decide if you met those expectations." - Howard J. Luks

Efficiency, Value, And Unexpected Consequences
"I settled into my morning routine, but couldn't shake the feeling that something was wrong... I entered the exam room to find my first patient anxiously clenching the exam table. Before I could open the chart, he began to sputter." - Jordan Grumet

Voices of Shared Decision Making

"We need to focus on re-educating clinicians about how to partner with patients — how to elicit patient preferences, and how to anticipate when a decision is a preference-sensitive one. We also need to coach patients, to help them not only learn information relevant to their treatment choices but also to help them find ways of communicating their desires more effectively to their clinicians." - Peter Ubel

Mission: Peace For You

"When we feel love and kindness for others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace." - The Dalai Lama

Look for next week's HCSM Review to be hosted by the venerable chancellor of SMUG (Social Media University Global), Lee Aase. 

#HCSM Review - Send In Your Submissions

What motivates you? What demotivates you?

On Wednesday, Sept. 19, The Afternoon Nap Society will host HCSM Review—the peer-reviewed blog carnival for everyone interested in health care social media. This edition will focus on the theme of motivation and how it play into our roles as patients, providers and caregivers.

Submitting a post is easy. Simply email a link to your post or posts (no more than two submissions per author) by midnight (ET) on Sept. 17. The more honest the post the better—this isn't about being a hero; it's about carrying on. For good measure, format your submission email as follows: 

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent link to post:
Your Name: Name, Username, Nickname, or Pseudonym
Description or brief excerpt:

Learn more about HCSM Review by visiting HealthWorks Collective.