How To Have A Patient-Focused Conference: Thoughts On Day Two
The kick-off of day two of the ePharma Summit started an inspiring dialogue about peer support for patients and having mindful and intentional impact. Matthew Zachary spoke about his "Stupid Cancer Story" and how patient/peer support groups saved his life. Judy Sewards spoke on how getting too focused on our numbers and technology can distract us from providing meaningful impact to the industry and to patients. I was excited to extend my enthusiasm from day one onto the agenda for day two.As we moved forward throughout the day, I became attuned to a few missing pieces and, unfortunately, a few disappointing factors of the ...
Source: ePharma Summit - March 2, 2016 Category: Pharmaceuticals Tags: Invisible Illness #digitalhealth #epharma #ePharma16 digital patients empowered patients Engaged Patients ePatient ePharma Summit 2016 healthcare and patient relationships patients included Source Type: blogs
Mixed Feelings as a Patient on Day Two of #ePharma
This morning's talk by Judy Sewards says it all. I was ecstatic to be able to share that enthusiasm, the same enthusiasm I felt yesterday.The opening from Judy above as well as Matthew Zachary's patient perspective started the morning with goosebumps. All stakeholders in the crowd were pumped up!Even during some of the more technical conversations, people like Alicia Staley tried to keep the conversation focused on patients - or, at least, keeping in mind that patients were here and able to help.I felt like we had made progress, like patients were FINALLY being valued.As excited as I was about this conference yesterday and...
Source: ePharma Summit - March 1, 2016 Category: Pharmaceuticals Tags: #ePharma16 Educated Patient empowered patients Engaged Patients token patients Source Type: blogs
Personalizing it right: “right content, to the right person, at the right time”
On day two of the ePharma Summit Steve Case, CEO of REVOLUTION and AOL chairman, gave the keys to success: convenience, community, and personalization. In order to make this happen, according to Case, you need better technology to garner senses of community and create tailored innovation even in an industry that is under greater regulatory scrutiny than its peers. It seems as though pharmaceutical industries have been able to mesh the ideas of convenience (mobile app accessibility) and community (social media platforms), personalization is where there is room to grow and innovate. While social media and mobi...
Source: ePharma Summit - March 1, 2016 Category: Pharmaceuticals Tags: #ePharma16 AOL Digital Health Digital Pharma Marketing ePharma Summit ePharma Summit 2016 Social Media Steve Case Source Type: blogs
AllTrials update
Dear friend of AllTrialsOver the past few weeks we've heard some great examples of what AllTrials supporters are doing to get all clinical trials registered and reported. Here’s what some of your fellow campaign supporters have been up to.Consultant Diabetologist Dr Aus Alzaid from Saudi Arabia was interested in the results of a clinical trial investigating the effect of metformin on cognitive function. The trial was completed in 2012 but results have never been published. After writing emails to the researchers and academic institution asking for the missing results, we have now heard they will be published be...
Source: PharmaGossip - October 4, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Marcia Angell writes
By Marcia AngellIn 1953, a new drug was released by Burroughs Wellcome, a pharmaceutical company based in London. Pyrimethamine, as the compound was named, was originally intended to fight malaria after the microorganisms that cause the disease developed resistance to earlier therapies. The drug was used against malaria for several decades, often in combination with other compounds. It’s mostly used now to treat toxoplasmosis, a parasitic infection that can be life-threatening in people whose immune systems are suppressed, for example, by HIV/AIDS or cancer.More than 40 years later, Burroughs Wellcome merged with the ...
Source: PharmaGossip - October 3, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
AllTrials in the USA
We’re excited to announce that 50 patient groups, consumer organisations and medical societies have come together to launch AllTrials USA today! These groups have said:"We are calling on everyone in our sector to join us in supporting the AllTrials campaign. Hundreds of thousands of patients have taken part in clinical trials which have never reported results. For every day that passes, more information is at risk of being lost forever. We have to make every clinical trial count. Join us today."Patient activist AnnaMarie Ciccarella said: “We provided our bodies, our tissue samples, our data. I’ve heard...
Source: PharmaGossip - July 28, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Richmond Pharmacology update
Here is a quick note about yesterday's hearing. Judgment is expected next week. The judge grasped the importance of trial registration and when he took into account our and the HRA's evidence on legal and ethical obligations to register trials he found that Richmond was left with an extraordinarily narrow argument. It seems the case will come down to some words in a Q&A on HRA's website that wasn't amended at the same time as the sponsors' declaration was. And then whether the ambiguity was significant.We are so pleased we decided to intervene in the case. The court could find for Richmond on this very narrow...
Source: PharmaGossip - July 19, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Further Update
Hi AllTrials friendsYesterday we sent our submission to the court in the judicial review brought against the HRA by Richmond Pharmacology.We have spent the last few weeks ploughing through the hundreds of pages of documents. Richmond is currently asking the judge to rule that there is no overriding legal requirement to publicly register any trial. That’s not correct. Since 2011 all trials except for adult phase 1 have been publicly registered through the EU Clinical Trials Register. And by next year this legal requirement will extend to all clinical trials unless exempted according to some very tight criteria. Richmond i...
Source: PharmaGossip - July 7, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
AllTrials vs Richmond Pharmacology
Dear AllTrials friendWe hoped to tell you more about the case Richmond Pharmacology is bringing against the HRA. That's not been straightforward. Richmond has now changed their argument three times and has altogether abandoned some arguments it relied upon earlier, so getting to grips with what is at stake has been difficult and time consuming for us and for our lawyers.At the beginning of this week it looked as though Richmond had narrowed the case down to a technical argument about the wording of HRA’s guidelines which only applied for a period of 10 days earlier this year.Just as the issues seemed to be narrowing, Ric...
Source: PharmaGossip - June 24, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Ben Goldacre writes in the BMJ - How medicine is broken, and how we can fix it
The chief medical officer’s review on statins and oseltamivir may look for answers in the wrong placesLast week there was extensive news coverage of a leaked letter written by the chief medical officer to the Academy of Medical Sciences. This letter focused especially on concerns around statins and oseltamivir (Tamiflu) and asked the academy for an “authoritative independent report looking at how society should judge the safety and efficacy of drugs.”1 The academy has since announced that it is convening a working group on the subject.With any such report there are two major risks. The first is a focus on “trust”...
Source: PharmaGossip - June 22, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
A message from AllTrials about Richmond Pharmacology's Judicial Review
Dear AllTrials friendAs most of you know Richmond Pharmacology has brought a judicial review against the Health Research Authority because it insists on the registration (not even reporting, but registration) of clinical trials. Read more.This is a quick note to let you know that we have obtained the court papers (hundreds of them!), we are looking urgently with lawyers at what can be done and we will be in touch next week to tell you. In the meantime, if you have been meaning to help with our campaign fund, now would be a great time... And if you can help with time over July, please tell us by replyin...
Source: PharmaGossip - June 11, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Sidney Wolfe writes in the BMJ - AllTrials - Selective clinical trial
reporting: betraying trial participants, harming patients
Reporting biases found in trials of cardiovascular devicesReporting biases in published trials were first identified in 1986.1 Published randomized studies of combination chemotherapy compared with treatment with an alkylating agent as first line treatment for ovarian cancer showed a significant survival advantage for combination chemotherapy. Unpublished cancer trial registry data from the same studies, however, showed no such advantage.2 Similarly, in the treatment of multiple myeloma, registry data suggested a smaller survival advantage for combination chemotherapy (over prednisone and an alkylating agent) tha...
Source: PharmaGossip - June 10, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Sidney Wolfe writes in the BMJ - AllTrials - Selective clinical trial
reporting: betraying trial participants, harming patients
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Source: PharmaGossip - June 10, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
Ben Goldacre - Progress and Barriers on Clinical Trials Transparency
(Source: PharmaGossip)
Source: PharmaGossip - April 30, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
From Evidence-Based Medicine to Marketing-Based Medicine
Dr Peter Parry is an Australian child & adolescent psychiatrist who has researched the "Pediatric Bipolar Disorder" diagnosis emanating from the USA, a diagnosis completely at odds with his training and clinical experience in Australian child and adolescent mental health. As part of his research into the PBD phenomenon, he noticed hundreds of internal pharmaceutical industry documents publicly released from court cases against pharmaceutical firms by State and Federal Attorney Generals in the USA. These documents concurred with findings of the US Senate "Grassley Commission" into conflicts of interest between the ...
Source: PharmaGossip - April 30, 2015 Category: Pharmaceuticals Authors: insider Source Type: blogs
