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Finding the patient voice

How patients feel and speak about clinical trials

patients

Nearly 80% of all clinical studies fail to finish on time, and 20% of those are delayed for six months or more, with 85% of clinical trials failing to retain enough patients.

This time ten years ago, clinical trials enrolled 1,400 patients across an average of 67 sites, cost $86.3m, and lasted about two and a half years, with a 70% chance of bringing a new drug to the market. Nowadays, trials involve over double the number of participants across over 100 sites, costing about three times as much over two and a half years, but with only a 50-60% probability of the drug getting approval.

These statistics only give a small idea of one of the biggest problems that the pharma industry is facing - patient recruitment. There is a serious ongoing discussion about why this is such a challenge for all those involved in the drug development process. Some blame the study design, the investigator site, the investigators, the sponsor’s staff and their contractors, but it all comes down to one thing - how efficient their communication with patients was.

HealthUnlocked, the largest social network focusing on healthcare, and FindMeCure, the platform that changes the way people access clinical trials, have conducted multiple surveys across different therapeutic areas such as rheumatoid arthritis, oncology, psychiatry, cardiovascular diseases, rare diseases etc. They combined data from both 24-hour surveys of more than 200 patients across the globe and data gathered through deep industry research and continuous patient surveys.

This data provided the big picture about what motivates people to join clinical trials, their anxieties and their experiences.

A 2017 report by HealthUnlocked surveyed over 20,000 patients on their attitude towards clinical trials. The aim of the study was to identify the key motivations that either lead a patient to seek alternative medical treatments or avoid them. The report successfully pinpointed four main patient profiles, those who:

  • Participated in a clinical trial;
  • Did not participate due to lack of information;
  • Knew of a trial and chose not to take part;
  • Wanted to participate, but were not eligible to do so.

Only 18% of the surveyed patients had taken part in a clinical trial. The two leading factors for electing to participate in a trial were a desire to help the advancement of medical research and being encouraged to do so by a qualified doctor or nurse. Clearly, empathy towards fellow patients with the same condition was the leading motivation for participating in a clinical trial.

Yet, taking part in a trial is a journey 100% of surveyed patients state they would embark on again. This statistic clearly dismisses any speculation as to alternative medical treatments being an unfavourable option for the chronically or terminally ill. Close to 50% of participants in clinical trials rate their experience as ‘very positive’.

If participating in a clinical trial is deemed to be such a viable option by a clear majority of patients, why don’t we see more of them taking advantage of the opportunity? According to HealthUnlocked, over 70% of eligible patients were not given access to information about clinical trials. In addition, over 93% of those deemed ineligible to take part in a trial were not given other trial options.

This is a problem. Over 80% of clinical trials fail to enrol a sufficient number of eligible patients. When trials are not completed, the advance of medicine and science stalls. Without clinical trials there would be no new life-saving drugs. Pharmaceutical researchers would be preventing from testing the efficacy and safety of potential new treatments. Every time a clinical trial fails, an opportunity to save or improve the lives of the terminally or chronically ill is wasted.

In addition, only 10% of the patients surveyed by HealthUnlocked indicated they knowingly chose not to participate in a clinical trial. The main reasons they cited were concerns about safety and potential privacy intrusions. While these concerns are valid, clinical trials today are ranked on the basis of their reputability and patient-trial fit.

There is a clear market failure in providing patients with much-needed information on the availability of clinical trials. This is further indicated by the fact that over 65% of patients state they would be more likely to participate in a trial if they had been given more information about it. The overall conclusion is that patients want to participate in clinical trials, but are hindered by the lack of readily available information.

On the other hand, a parallel study done by the global online patients’ platform for clinical trials FindMeCure reveals additional aspects of the current situation. FindMeCure has studied the motivations for participation in clinical trials of hundreds of patients who have shown clear intent to take part in clinical trials by applying to do so through the platform.

The majority of the patients who have applied for clinical trials participation using FindMeCure say they are disappointed with their current treatment, which usually only targets the symptoms of the illness (39%) or does not achieve any positive effects at all (32%). With chronic conditions (15%) or fighting mental illness like depression (12%), most of them hope to find a permanent solution by joining a trial.

It is worth pointing out that this group of patients differs slightly from the rest of the patients, as this group were more proactive about improving their general quality of life by researching and, most importantly, by choosing to access innovative treatments online using a digital tool like FindMeCure. Almost half of patients confirm that they often use the Internet to find information and solutions for their health.

Moreover, when it comes to their condition and health status, nearly 50% of the respondents trust their own judgement the most. This data only proves that attitudes and behaviour models are dramatically evolving in comparison to the traditional manners of finding and joining a clinical trial through recruitment agencies or as a result of doctors’ recommendations.

The Wall Street Journal published an account of patients’ experiences with clinical trials last year. One of the patients interviewed for the article was John Whitley, 61, from Nyach, NY. Mr Whitley took part in a pancreatic cancer drug trial in 2011. Following the completion of the trial, the patient found out he had been given a placebo. Mr Whitley went on to volunteer at an NGO, working with pharma companies to make drug trials simpler for patients. Commenting on the initiative, Mr Whitley stated: “When you are dealing with the news of an illness, it can be such a daunting process to join a clinical trial. The simpler it is made for a patient, the better for everybody.”

Undoubtedly, patients should be made an integral part of the design, execution and follow-up assessment of clinical trials. Further, patient expert groups ought to be included in the regulatory design processes behind legislating for clinical trials. Notably, the ethics of promoting clinical trials should be given careful thought. Any awareness campaign should focus on providing information about participation, rather than encouraging it. Providing resources for individuals to make informed decisions about trial involvement is a crucial part of understanding the real risks and benefits associated with trial participation.

In order to achieve this level of patient involvement we first need to understand how patients feel and speak about clinical trials and be more open to their suggestions of how we should communicate with them, depending on their needs and anxieties. This ‘patient-centric’ approach should be not powered just by PR campaigns and new titles, but through real-world data and direct communication with patients and patient groups. More information on how patients feel about clinical trials will be shared in an official white paper, covering the results of surveys of thousands of patients across the globe, which will be published later this year.

Article by
Maya Zlatanova

is the co-founder of FindMeCure

15th February 2018

Article by
Maya Zlatanova

is the co-founder of FindMeCure

15th February 2018

From: Research

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