The TrialReach Blog


1 Comment

Simon Denegri: On Working Together

I don’t think there’s anyone in the UK  more passionate about patient participation in clinical research than Simon Denegri, the Chair of Involve and the NIHR National Director for Public Participation. I  recently had the pleasure of sitting down and talking with Simon about his plans for next year, which include an update of the UK Clinical Trials Gateway and a big patient outreach campaign, ‘Ok to Ask‘.

Screen Shot 2013-11-15 at 12.45.26

As Simon points out, under the NHS Constitution patients have a right to be informed of research studies in which they may be eligible to participate.

An important part of making this right a reality is bringing patients, researchers, the public sector and the private sector together to collaborate. As part of World Poetry Day,  Simon wrote a poem about the experience of a patient participating in clinical research and the power of working together. We have reproduced it here with his kind permission.

If we work together

We can do it better
This thing called research.

This endeavour.

So here I am
Neither subject nor guinea pig
With no letters after my name.

But I know a thing or two.
About what it’s like.
About what it’s really like.

And all I ask
Is that you let me ask
Why, when, who and what for?

I’ll work with you on a cure
Although I’ll be long dead by then I’m sure

(But who knows we might get lucky).

If you’ll also help me with the pain
And making the day
Worth waking for.

For when dusk does night betray
I want to be able to say
I made a difference for me, for you, for us.

Now that we are working together
Wouldn’t you say
it’s better?

This thing called life.


Leave a comment

Patient.co.uk and TrialReach: Giving patients greater access to clinical trials

We believe it is every patient’s right to know about the clinical trials that may be their only hope for better quality of life or their last chance to extend their life.

An important way for us to reach more patients with this vital information about clinical trials is through our partnerships with major health websites such as Patient.co.uk, the UK’s leading independent health information website. Together we have launched an new easy- to-use tool that empowers anyone searching for information on Patient.co.uk to find and directly apply to participate in clinical trials.

Check it out and let us know what you think. We’d love to hear from you.

Screen Shot 2013-10-23 at 14.49.01


Leave a comment

Meeting the wonderful ‘e-patient Dave’.

We just had the great privilege of meeting Dave de Bronkart, otherwise known as e-patient Dave, in Boston. Dave’s journey to becoming one of the best-known patient advocates in the world began with a devastating diagnosis of a rare terminal cancer. Always a seeker of knowledge, Dave went online to learn more about his cancer and found the patient community and medical treatment that saved his life.

2000-01-01 00.00.49-3

e-Patient Dave sharing his thoughts about patient-centred clinical trials

Now Dave travels the world with a single mission; to help patients help themselves. Putting patients at the heart of the clinical trial is one of things he is passionate about and he shared with us some of his thoughts about how to empower patient communities in order to speed up the development of new treatments. One of the most interesting things Dave, in collaboration with a group of Parkinson’s patients, have proposed is that:

There’s a Time Value of a Therapy

Which May Outweigh Its Certainty

It’s a profound thought: time and risk are relative. As Dave says, when you are a patient with a rare progressive disease time is EVERYTHING. What this means is that patients may be willing to experiment and take more risks with new treatments being tested because it may be their only hope for better quality of life or their last chance to extend their life. In many cases, they literally can’t wait ten years until a promising new drug has been approved by the FDA.

His point is that by putting patients at the centre of clinical trials we can develop ‘patient centred outcomes’. Ultimately, he says, patients should help define the goals of a trial.  What do they think is important? What are they hoping for? What risks are they prepared to take? It’s a radical notion in the context of the way trial protocols are developed today but one that resonates with our patient-first focus.

2000-01-01 00.00.48

‘e-Patient Dave’ in conversation with our CEO, Pablo Graiver

If you would like to find out more about Dave or how to be an empowered patient here is the link to his new book Let Patients Help! or check out his inspiring and entertaining Ted Talk. Hint: It’s great, Dave even performs a rap song.


Leave a comment

TrialReach in Forbes

We just got back from an amazing week in Boston at the Disruptive Innovations Conference, where we unveiled our new self-service platform to the world. (See our previous blog post for details.) The response has been great, including this article in Forbes by John Nosta, one of the world’s leading health influencers.

Now we would like to issue a challenge to all medical researchers. On behalf of patients everywhere, we want all trial protocols to be converted into a format that patients can easily read and understand. You can do it now here on our platform: http://trialreach.com/trialmanager/. It’s completely free for academic researchers.

Screen Shot 2013-09-26 at 14.39.33

For the full article click here: http://www.forbes.com/sites/johnnosta/2013/09/20/trialreach-and-the-democratization-of-clinical-trials/.


Leave a comment

Kristen’s Story: Because Every Day Counts

Today is a very important day for TrialReach and all the patients who rely on us to help them find, understand and apply for clinical trials. We are opening up our platform to all medical researchers so even the smallest teams have the same opportunity as big pharmaceutical companies to reach the patients they need to complete their studies on time.

Despite the continuous advances in medicine, millions of patients still lack effective treatments that could cure, or help them manage, their conditions. Their only hope is that researchers find new and better treatments – and this can only be done through successfully completed clinical trials.  Our mission at TrialReach is to make that vital connection between patients and researchers so that, by working together, we can get effective new treatments to patients more quickly.

Because every day counts.

To see the impact clinical trials can make on a patient’s life take a look at our latest video: Kristen’s Story: http://youtu.be/oU6PYIDvfeg

Screen Shot 2013-09-10 at 16.07.45


Leave a comment

Kim’s Story: In Seven Tweets

This is the story of breast cancer patient, Kim Mawby, and a clinical trial at the Royal Marsden cancer centre in the UK. Kim’s story was published on Twitter and, as it was so inspirational and such a great use of Twitter, we wanted to share it with you.

Picture 18Picture 12Picture 13Picture 14Picture 17Picture 15Picture 16Note: The Royal Marsden is a world-leading cancer centre specialising in diagnosis, treatment, care, education and research:. http://www.royalmarsden.nhs.uk. If you want to find out more about the T-DM1 clinical trial  click here:  T-DM1.


Leave a comment

We Owe Patients More: Rahlyn Gossen

We recently came across another passionate advocate of putting patients first in the development of clinical trials. Rahlyn Gossen, who is the founder of Rebar Interactive, quotes Maya Angelou in one of her insightful blog posts:

Screen Shot 2013-08-01 at 09.52.34

We called Rahlyn in New Orleans to find out more about what we can all do to make patients feel better about clinical trials.

How can we make clinical trials more patient friendly?

In general, we need to put ourselves in the shoes of patients. It’s really about empathy. Ask yourself, would I want to take part in this trial? Specifically, we need to communicate in a way that patients can understand and simplify documents, such as the informed consent form. I enjoy talking with people who know nothing about clinical trials and don’t understand the jargon because it’s a great opportunity to check myself.

How did you get involved with clinical trials?

I was a clinical research coordinator at a site in Denver so I have worked extensively with patients who are considering or participating in clinical trials. An important part of my job was translating dense clinical trial jargon into more patient- centric language. We also have to remember that patients are trying to process many complex feelings; not just about the trial but about their disease.

How do clinical trials make people feel?

Confused and intimidated. I think a lot more work has to go into all aspects of clinical trials. We need to consider the needs of patients much earlier in the process, when the protocols are being developed. For example, I was working on an Alzheimer’s trial and compliance was an issue because patients couldn’t open the drug packaging. I also think we have to be more transparent about what we think a drug might be doing and not set overly optimistic expectations. It’s important not to crush hopes but we also have to be realistic about what the benefits might be.

What motivates you?

Seeing drugs get approved is very satisfying but we owe patients more. Making clinical trial information more patient- focused is a critical step in giving them what they deserve.

Note: Rahlyn is a judge in Lilly’s Clinical Trial Visualization Redesign Challenge. This competition is intended to spark creative solutions for making it easier for patients to understand and make informed decisions about clinical trials.

Follow

Get every new post delivered to your Inbox.

Join 1,215 other followers