10,000 Signatures in 9 days–we are on a roll!
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org.
Recently, a group that writes guidelines asked for my input about the role of patients in the development of Evidence Based Medicine guidelines. With universal healthcare now ‘the law of the land’, treatment guidelines have become even more important. Preserving the integrity of the guideline development- process is what matters most. It is essential that patients play a role in the process that can so affect their lives. The question posed to me was why should those developing guidelines involve patients? My response follows.
If you have not read the recent article by Brenda Patoine, "Guideline-Making gets tougher: Action by state attorney general over Lyme disease guidelines stirs debate, " I recommend you do. It is a good reminder that reporters can still do the in depth coverage of complex issues and hold their ground on reality based reporting.
Even a few short weeks ago, who would have thought we’d be wearing face masks…
On February 2, 2009, the IDSA announced the opening of the 60-day public input period. The period expires at 5 pm on April 3, 2009. While many issues remain to be sorted out, this posting presents some of the currents Q&A issues that patients are raising.
Two new Lyme cases should make school and summer camp officials more vigilant about preventing tick-borne illnesses in students. The fact is that the threat of a law suit can motivate needed change. I remember how difficult it was to get schools to take rape seriously. For years, people complained and nothing happened. Then lawsuits were filed and campuses woke up. They started educating students about rape risks and precautions, installing more lights, making guards available to walk students to their cars late at night and so forth. Parents and students would welcome that type of sea-change in Lyme disease prevention.
Merrill Goozner, a highly regarded medical ethicist, posted a recent commentary on conflicts of interest, "No Light at the End of the Tunnel on Disclosure." The commentary expresses his disappointment at the paltry level of self-disclosure of conflicts even under legal pressure. Those of you following the IDSA antitrust action commenced by Attorney General Richard Blumenthal in Connecticut may recall that the conflict of interest disclosure level of the IDSA panel members increased dramatically AFTER the investigation was launched. It's remarkable how helpful another set of eyes, particularly those of an official, can be when drafting conflict of interest disclosures. My commentary to Merrill's post follows:
