Improving Patient Recruitment for Rare Disease Clinical Trials

Improving Patient Recruitment for Rare Disease Clinical Trials

Clinical trials for rare diseases present unique challenges, but there are effective strategies that sponsors and CROs can employ to enhance patient recruitment and retention.
Recruiting engaged patients for clinical trials has always been a hurdle due to the substantial costs involved. However, studies indicate that patients are willing to participate, but a major obstacle is lack of awareness. Therefore, prioritizing digital patient outreach is crucial for disseminating information about clinical trials effectively.
This is particularly pertinent for rare disease trials. The rarity of these conditions means a smaller pool of eligible patients, and those managing chronic conditions face daily challenges that demand a thoughtful approach to outreach.
Challenges in Recruiting Rare Disease Patients
Understanding the daily struggles of patients and their families is paramount when communicating with rare disease populations. Sponsors and CROs must grasp the impact of these conditions and tailor their messaging accordingly. For instance, in a cystic fibrosis trial, addressing specific symptoms of interest to the audience is vital.
Moreover, logistical issues such as travel to investigator sites pose significant barriers, especially given the dispersed nature of rare disease patients. Offering transportation solutions, such as partnerships with rideshare services, can ease this burden and demonstrate commitment to patient well-being.
Building Trust Through Communication
Establishing trust with patients is essential for engagement and adherence to clinical trials. Regular communication and reminders, delivered via text or email, can enhance compliance and foster a sense of connection between researchers and participants.
Digital Outreach Strategies
Online patient communities serve as valuable sources of support and information for individuals with rare diseases. Sponsors and CROs can leverage these platforms for targeted advertising and direct engagement with potential participants. Utilizing search and social media advertisements allows for broader reach and connects with patients actively seeking information about their conditions.
Crafting Empowering Messages
Effective outreach campaigns avoid portraying patients as victims and instead focus on empowerment and connection. Clever messaging that resonates with patients’ experiences and avoids patronizing tones is key to successful digital outreach efforts.
By embracing innovative recruitment strategies and empathetic communication approaches, sponsors and CROs can overcome the unique challenges of recruiting patients for rare disease clinical trials and ultimately advance medical research in these underserved areas.
Building Patient Trust in Clinical Trials

Building Patient Trust in Clinical Trials

In an era marked by growing concerns over data privacy, sponsors and CROs face the challenge of earning patient trust amidst widespread skepticism towards data handling practices, particularly in the healthcare industry. According to the Pew Research Center, a significant majority of U.S. adults express apprehension about how companies utilize their data, with the pharmaceutical industry ranking lowest in public perception.

To address these challenges and foster patient trust, sponsors and CROs can adopt strategic approaches aimed at providing valuable information and engaging directly with patients through social media platforms.
Transforming Second Opinion Care The Power of Medical Record Organization

Transforming Second Opinion Care: The Power of Medical Record Organization

The demand for second opinions in the field of Oncology is experiencing a significant uptick, largely fueled by both self-referrals and employer-based services.
A survey commissioned earlier this year by The Clinic by Cleveland Clinic and conducted by Acumen Marketing Research, found that, about 21% of initial diagnoses are incorrect, while 66% required significant modification. Due to the seriousness of critical diagnoses, patients are now more inclined to seek confirmation or explore alternative opinions regarding their condition. An astounding 71% of survey participants who have faced a significant health issue have contemplated seeking a second opinion, with a remarkable 78% expressing their eagerness to explore alternative opinions if their employer provides it as a benefit.
Employers are increasingly realizing the benefits of second opinion services. However, despite this awareness, a recent survey conducted at the Society for Human Resource Management meeting revealed that only 16% of attendees currently provide second opinion benefits, mainly through virtual platforms. By investing in a top-notch second opinion program, employers can not only alleviate financial burdens but also ensure that their employees receive the most effective and medically necessary treatments. Research shows that every dollar spent on a second opinion program can result in a $2.63 reduction in medical costs for employers. Beyond financial considerations, employers are driven by a desire to guarantee their employees receive timely and optimal care.
In today’s landscape, patients have unprecedented access to information regarding their diagnosis and potential treatment options, as well as insights into facilities well-known for their expertise in specific disease types. Making it imperative for destination facilities to be equipped to manage this influx of appointments efficiently.
One critical way a healthcare system can stand out is through its ability to quickly collect and organize medical records for clinical review. Compiling patient data can be laborious and organizing it in a manner that facilitates easy navigation for clinical teams can be even more challenging.

Imagine offering hospital clinical teams’ access to patient data in a clinically organized, specialty-focused digital format that:

This method of organizing patient data has the potential to completely transform the effectiveness of clinical assessments, leading to more effective care plans and productive patient appointments. Delivering data in this format meets the needs of the growing population seeking second opinions, allowing facilities to accommodate this demand without increasing staffing levels.

A concerted effort to optimize how patient data is compiled and delivered can:

With decades of experience iHealthSync360 is uniquely positioned to provide invaluable expertise in enhancing efficient and streamlined care for both patients and staff. Allow us to leverage our proven best practices to benefit your organization and prioritize the well-being of your patients.
Enhancing Patient Care with Intelligent Medical Record Retrieval

Enhancing Patient Care with Intelligent Medical Record Retrieval

In today’s healthcare landscape, Electronic Medical Record (EMR) systems play a crucial role in hospital operations. However, the effectiveness of these systems heavily relies on the accuracy and quality of the data they contain. Intelligent medical record retrieval addresses this challenge by ensuring that patient medical histories are gathered, formatted, and indexed accurately before being integrated into EMR systems.

With the ever-expanding range of medical treatments and options available, having a comprehensive understanding of a patient’s medical history is more important than ever. Yet, the process of manually inputting data into EMR systems is prone to errors and inefficiencies.

Consider the current manual process of data input: Accessing relevant medical history is often a laborious and disjointed task, consuming valuable time. Even after obtaining external medical records, clinical staff must manually review each page to verify patient details and extract critical information. This process can take anywhere from 40 to 80 minutes per patient, without effectively transferring essential data to the center’s EMR.

The objective of intelligent medical record retrieval is to seamlessly integrate various record types, EMR outputs, and resources into a standardized format compatible with the target EMR system. iHealthSync, for example, has developed a sophisticated indexing system that enables seamless integration across different EMR platforms. Additionally, if an EMR system is unavailable or lacks automated conveyance capabilities, indexed records can be delivered in a PDF format.

As patient care grows increasingly complex, it’s imperative that the systems supporting treatment remain agile and efficient. The term ‘intelligent’ is significant because these systems should operate seamlessly in the background, without adding complexity for clinicians and medical professionals. They need to be reliable and intuitive, allowing healthcare providers to focus on delivering optimal patient care.

Danielle DeSilva

CEO iHealthSync

 

Navigating the complex maze of medical information to provide exceptional patient care

Navigating the complex maze of medical information to provide exceptional patient care

In the ever-evolving landscape of healthcare data, fragmentation is surpassing aggregation at an alarming rate.
As the healthcare data landscape rapidly expands, it opens doors for revolutionary advancements in patient care. Yet, the abundance of patient data brings challenges as fragmentation grows, hindering smooth data exchange and making it harder to pinpoint clinically relevant information.
Healthcare professionals are confronted with a daunting task when they receive an out of network referral: navigating a complex maze of medical data from multiple sources in order to deliver top-notch care to their patients. From the collection of records and pathology materials to scrutinizing lab results and radiology images, the sheer abundance and variety of information can overwhelm even the most experienced expert. Adding to the challenge are the diverse origins of this data – coming directly from providers, ROI vendors, Health Information Exchanges (HIEs), and networks, each with its unique formats and delivery methods like APIs, portals, secure messaging, and even fax. This fragmented scenario not only consumes precious time for clinicians but also results in treatment delays, increased levels of burnout among healthcare providers, and ultimately leaves patients unsatisfied with their care.
Balancing the increasing demand for specialized patient information and provider requirements while navigating the challenges of accessing fragmented data from various medical sources is causing clinician burnout. Recognizing the urgent need for a solution to this widespread issue, healthcare systems are embracing advanced technology to streamline clinical workflow management. Introducing iHealthSync360® – an innovative technology solution integrated with AI and poised to transform the collection and management of patient data.
At the heart of iHealthSync360 lies its ability to effortlessly collect data from a myriad of sources, locations, and file types including pathology materials and actual radiology images. By partnering with a vendor like iHealthSync that has technology enabled by AI is capable of efficiently extracting information from various sources, healthcare teams gain access to comprehensive medical histories for every patient, empowering them to make well-informed decisions with confidence and ease.

Here’s how iHealthSync360 is transforming the landscape of patient data collection:

The need for a streamlined approach to patient data collection has never been greater. With iHealthSync360 and AI, healthcare systems can revolutionize their clinical workflow management, empowering clinicians with access to comprehensive patient histories, reducing treatment delays, mitigating burnout among healthcare providers, and enhancing patient satisfaction. In an age where information is vital, iHealthSync360 stands at the forefront of innovation, paving the way for a brighter, more efficient future in healthcare delivery.

Author~ Alessandro Margiotta

iHealthSync Business Development Manager