“Just” listening no more…

The following blog is from our colleague, Meg Gaines, founding director of the Center for Patient Partnerships at the University of Wisconsin, Madison. Meg is a fellow educator of advocates--graduate students from the many graduate and professional schools at U Wisc who take courses in patient advocacy and learn to be advocates in a supervised clinical program that serves patients and family in need. These thoughts about listening have become crystalized for Meg as she and her colleagues plan a new training program in patient advocacy for lay breast cancer advocates in the community. They seemed useful for all of us who work on our listening skills in order to hear, and thus to serve.

Words are so powerful – even little, qualifying words like “just.” Over the last few years, I have often asked students and colleagues what they did for a particular client only to hear them reply that they “just listened.” As if listening to someone is somehow minimal. As if listening to someone is anything less than an act of profound honor and respect. As if listening isn’t one of the most difficult things to do well. There’s nothing “just” about truly listening.

Listening requires me to set aside my own agenda. It necessitates that I suspend my judgments – sometimes dozens of them in a matter of minutes. I am called upon to put down my pen, turn away from my list of things to do, take my eye off my watch, forget about all the conversations I am reminded of as this person tells this story, fend off my overactive brain’s constant suggestions of what I would do if I were faced with this dilemma. Listening requires active focus. It requires me to step entirely outside of myself and take in what is being said in relation to the speaker – not in relation to me. Listening is hard work.

I suspect that “just listening” derives from the kind of self-focused, I-can’t-wait-until-she’s-done-talking-so-I-can-tell-her-my-story-which-is-much-more-amazing-than-hers sort of interactions that I, at least, have more of than I like.

Real listening happens when I slow down enough to set my life aside for a moment and notice, honor and accept another being into the space in front of me. It is work right up until I let go of me and settle into another. Then, it is peaceful and rejuvenating – it is that profoundly precious gift that comes from giving.

Take a moment sometime soon to set your self aside and listen deeply to someone else. Stay with it, even as your mind wanders through Judgment Junction and Suggestion Swamp, redirect it gently to the miracle life force placing this profound trust in you. Try to hear, see and absorb the significance of the words to their speaker. There is nothing “just” about this listening.

“Astroturf” Advocacy

Earlier this month an article in Newsweek online (October 5, 2006) reported that there was a growing movement among medical centers—mainly it seems academic medical centers—and some physician groups to ban or regulate gifts from pharmaceutical companies. This includes token freebies—pens, notepads, post-its—from sales reps as well as more significant amounts spent for free lunches, underwriting educational programs and conference travel stipends. While the 24, 2006, “Doctors Urge Ban on Gifts From Drug Makers”)

Unfortunately there has been much less attention paid to pharmaceutical support for health/patient advocacy organizations, although potential conflicts of interest are similar and serious. On my office closet door I now have hanging a conference bag in which I am accumulating “trinkets” given away at health/patient advocacy conferences, mainly contributed by pharmaceutical companies who have helped sponsor the conferences. Many—perhaps most--advocates are only too painfully aware of the dilemmas they face regarding whether to accept pharmaceutical funding for their struggling organizations—how to do their valuable work without taking money from the very corporations that benefit from the diseases they are trying to fight.

The title of this blog comes from Drummond Rennie, deputy editor of JAMA, who calls advocacy organizations that are almost extensions of pharmaceutical company marketing departments, “Astroturf.” “Astroturfing in politics is the practice of disguising an orchestrated campaign as a spontaneous upwelling of public opinion.

A recent study done by New Scientist, “Patient groups special: Swallowing the best advice?”, sheds some light on the extent to which pharmaceutical and device companies fund patient advocacy organizations in the US.

New Scientist studied 29 US patient advocacy organizations:

o 20 US patient groups operating on a national level with annual revenues of more than $100,000 (randomly selected from GuideStar database)
o 5 US patient groups with revenues exceeding $10 million (randomly selected from GuideStar database)
o 4 US patient groups, again with annual revenues exceeding $100,000, associated with bipolar disorder, restless legs syndrome and attention deficit hyperactivity disorder, conditions highlighted in April by the journal PLoS Medicine as being susceptible to by the pharmaceutical industry.

Some survey results:
· Seven groups received 20 per cent or more of their funding from pharmaceutical and medical device companies, including all four linked to the conditions over which accusations of disease-mongering have been made.
· Groups that received more than 20 per cent of their funding from industry did seem to be associated with conditions that affect a significant number of people, for which a specific therapy exists and which require long-term treatment, therefore creating the potential for substantial profit.
· Groups in our survey that received no industry funding seemed to be for diseases that drug companies have little opportunity to profit by.
· The timing of donations also suggests a link to marketing interests, with donations to the advocacy group ceasing if the company stops producing drugs related to the disease.
· Just two groups - the National Women's Health Network (NWHN) and Breast Cancer Action - refuse to accept donations from pharmaceutical or medical device companies. "We want women to know that when they come to us, they are getting independent information," says Amy Allina, the network's programme director. "We think of ourselves as virtuous, but poor."
While patient groups deny any connection between their activities and the donor support they receive, a “gift relationship” does exist, say researchers.

Sharon Batt of Dalhousie University in Halifax, Canada, has just begun to study patient group behaviour and funding after years working in breast cancer advocacy, where she noticed a general pattern. Organisations that accept pharmaceutical funding "tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see 'direct-to-consumer' advertising as a benefit to patients." Groups that maintain financial independence, on the other hand, "emphasise safety over speed and are critical of direct-to-consumer advertising."

Complete disclosure of industry funding by patient groups is almost unheard of, but the massive American Heart Association, which boasts an annual revenue of more than $650 million, is leading the way. This month, it will begin posting an itemised list of pharmaceutical and medical device company donations on its website.