Michael J. Fox Foundation expands Fox Trial Finder
The Michael J. Fox Foundation for Parkinson’s Research (MJFF) has launched the Fox Trial Finder (www.foxtrialfinder.org) in the UK, Ireland and Canada.
This first-of-its-kind online platform anonymously connects volunteers with and without Parkinson’s disease to clinical trials in critical need of participants.
Fox Trial Finder matches volunteers with the trials most likely to need them, increasing the efficiency of the enrolment process and empowering patients to get more involved in the discovery of new treatments.
It comes after a study by the MJFF found that 85 percent of Parkinson’s patients wanted to be better informed about clinical trials, while 61 percent said they didn’t know where they could find information about clinical trials.
To read the latest edition of Healthcare Global, click here
- Poorly brushing your teeth leads to early cancer deaths
- Neck cracking and spine manipulation leads to strokes
- UNICEF tackles pneumonia and diarrhea to save 2m lives
The organisation also discovered that more than three in four Parkinson’s patients wished there was a secure and anonymous online tool to help them locate clinical trials in their area.
“Fox Trial Finder is a practical, user-friendly solution to help everyday people get involved in research,” said Todd Sherer, CEO of The Michael J. Fox Foundation.
“Its matching capability removes one of the roadblocks to participation by making it easier to find the right trials.
“The tool instantaneously sorts through scores of trials to find the ones that specifically need you.
“And once you save a profile, Fox Trial Finder will continually alert you to your best matches as new trials launch, without you having to come back to the site to search again.”
Meanwhile Tom Isaacs, Co-founder of The Cure Parkinson’s Trust, London, UK, added: “We know people with Parkinson’s are constantly looking for ways to participate in clinical research.
“The introduction of Fox Trial Finder as a platform to learn more about trials will help to grow the clinical research community and encourage more people to enrol in trials which will help lead us to a cure for Parkinson’s.
“As someone with Parkinson’s myself, I am passionate about the role clinical trials play in translating science into actual treatments and a tool like Fox Trial Finder brings urgency and efficiency to that goal.
“No matter how much funding, collaboration and effort are put behind drug development, research cannot move forward without the help and involvement of the people who live with Parkinson’s.”
Also commenting on the launch was Dr. Kieran Breen, Director of Research and Innovation at Parkinson’s UK.
“Fox Trial Finder is a really positive step forward in the international effort to help find a cure for Parkinson’s,” he said.
“The more ways we can help people get involved in clinical trials, the more trials can be completed, enabling the development of better treatments and drugs for people with Parkinson’s – and ultimately a cure.”
Launched in beta version last July and officially in April 2012 in the United States, Fox Trial Finder currently includes more than 190 clinical trials in its system, with 60 in the United Kingdom specifically, and nearly 7,000 volunteers have already registered.
The site is now live in the United States, Ireland, Canada, UK and Australia, and is expected to launch in other international locations coming later this year.
Getting ready for cloud data-driven healthcare
As healthcare continues to recognise the value of data and digital transformation, many organisations are relying on the cloud to make their future-forward and data-centric thinking a reality. In fact, the global healthcare cloud computing market was valued at approximately $18 billion and is expected to generate around $61 billion USD by 2025.
At the forefront of these changes is the rapid adoption of cloud-based, or software-as-a-service (SaaS), applications. These apps can be used to handle patient interactions, track prescriptions, care, billing and more, and the insights derived from this important data can vastly improve operations, procurement and courses of treatment. However, before healthcare organisations can begin to dream about a true data-driven future, they have to deal with a data-driven dilemma: compliance.
Meeting regulation requirements
It’s no secret that healthcare is a highly regulated industry when it comes to data and privacy – and rightfully so. Patient records contain extremely sensitive data that, if changed or erased, could cost someone their life. This is why healthcare systems rely on legacy technologies, like Cerner and Epic EHRs, to manage patient information – the industry knows the vendors put an emphasis on making them as secure as possible.
Yet when SaaS applications are introduced and data starts being moved into them, compliance gets complicated. For example, every time a new application is introduced into an organisation, that organisation must have the vendor complete a BAA (Business Associate Agreement). This agreement essentially puts the responsibility for the safety of patients’ information — maintaining appropriate safeguards and complying with regulations — on the vendor.
However, even with these agreements in place, healthcare systems still are at risk of failing to meet compliance requirements. To comply with HIPAA, U.S. Food and Drug Administration 21 CFR Part 11 and other regulations that stipulate the need to exercise best practices to keep electronic patient data safe, healthcare organisations must maintain comprehensive audit trails – something that gets increasingly difficult when data sits in an application that resides in the vendor’s infrastructure.
Additionally, data often does not stay in the applications – instead healthcare users download, save and copy it into other business intelligence tools, creating data sprawl across the organisation and exposing patient privacy to greater risk.
With so many of these tools that are meant to spur growth and more effective care creating compliance challenges, it begs the question: how can healthcare organisations take advantage of the data they have without risking non-compliance?
Yes, healthcare organisations can adhere to regulations while also getting valuable insights from the wealth of data they have available. However, to help do this, organisations must own their data. This means data must be backed up and stored in an environment that they have control over, rather than in the SaaS vendors’ applications.
Backing up historical SaaS application data directly from an app into an organisation’s own secure cloud infrastructure, such as AWS or Microsoft Azure, makes it easier, and less costly, to maintain a digital chain of custody – or a trail of the different touchpoints of data. This not only increases the visibility and auditability of that data, but organisations can then set appropriate controls around who can access the data.
Likewise, having data from these apps located in one central, easily accessible location can decrease the number of copies floating around an organisation, reducing the surface area of exposure while also making it easier for organisations to securely pull data into business intelligence tools.
When healthcare providers have unfettered access to all their historical data, the possibilities for growth and insights are endless. For example, having ownership and ready access to authorised data can help organisations further implement and support outcome-based care. Insights enabled by this data will help inform diagnoses, prescriptions, treatment plans and more, which benefits not only the patient, but the healthcare ecosystem as a whole.
To keep optimising and improving care, healthcare systems must take advantage of new tools like SaaS applications. By backing up and owning their historical SaaS application data, they can do so while minimising the risk to patient privacy or compliance requirements. Having this ownership and access can propel healthcare organisations to be more data-driven – creating better outcomes for everyone.