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What makes a patient centric trial

12 October 2016

When it comes to patient centricity, where do we begin? Do we redesign the trial process to take patients’ needs more closely into account? Or do we work on raising awareness, and facilitating a wider culture of change? While these are all important pieces of the puzzle, it’s often the details that determine a patient’s experience of the trial process.

Let’s face it, patients in the later phases of clinical trials trials don’t need any extra things to worry about. Chances are these people are already battling a long-term illness, and attempting to rebalance their lives accordingly. While a clinical trial may offer these people life-changing treatment, the hassle that can arise from regular appointments may be enough to put even the most determined patients off being involved.

So how do we pull back from the bigger picture, and focus on the little interactions that make such a big difference? Perhaps we can start by thinking like a patient.

The trial begins in the car park

One complaint that CROs often hear is that there are inadequate parking facilities at the clinic or hospital. This may seem like a small issue, but an mdgroup study has shown that one in two clinical trials experience patient drop-out in relation to travel difficulties.

A popular option would be to arrange transport for your patients, saving them the stress of driving or taking public transport to regular appointments. A concierge car service would not only assuage patients’ worries about getting to and from appointments - it would also position your organisation as a professional and caring company, ready to go the extra mile.

Alternatively, ensure that there is designated parking for your patients to use, and that this is located near to the department you’re working in. If there is a walk between the car park and the reception, ensure that signs and directions are obvious and accurate. If any patients have reduced mobility, bear this in mind and ensure that somebody meets them in the car park.

Time is of the essence

Many patients will be attempting to maintain jobs and raise families while coping with their ongoing illness. This means that timing is always a crucial element when it comes to taking on more responsibilities. If patients are left waiting at their appointments, or their appointments are changed at the last minute, they may not feel able to continue with the trial.

Be consistently punctual and prepared for your patients’ appointments. This will increase their trust in you as a courteous professional. In the event of a delay, make sure that you communicate with your patients as transparently as possible, and take all available measures to ensure that they are not let down again.

Comfort is key

If your patients are likely to spend time in the patient reception area, make sure that they will be comfortable there. A few minutes’ wait is far less grating if the chairs are comfortable, the noise level is at a low, and the area is neat and clean.

Where possible, ensure that patients are met at reception by someone who knows who they are and what they have come for. This will help them to feel like valued partners in the trial.

Money matters

Even if some patients are able to hold down a full-time job while fulfilling their commitment to the trial, this will not be the case for everyone. Despite pharmaceutical companies’ reimbursement schemes, money can get tight when it comes to coping with chronic diseases, so every little helps.

See where you can assist your patients by reimbursing small expenses associated with the trial, such as parking, public transport, meals and daycare for children. The easier you make life around the trial, the more willing patients will be to continue with it.

Setting up a program for quick, secure expenses reimbursement will take a lot of pressure off patients. A custom app may include a portal

You can’t have enough feedback

Actively seek and listen to feedback from your patients on all aspects of the trial, from their physical reactions to the medicine itself to the ways in which their day-to-day lives are affected by being trial participants. Let them know how crucial their input is - this is not only a chance for them to help get a new treatment on the market, but also to contribute to the way that clinical trials are run.

Make sure that you gather as much qualitative data as you do quantitative, and that this is gathered in a variety of ways so that patients who may not feel comfortable discussing their problems with a researcher have an opportunity to put them into writing, and vice versa.

Above all, communicate

Clinical trial patients want to know they’re in good hands. If they feel uncertain about the people running the trial, they’ll soon talk themselves out of participating. You need to cultivate a culture of complete transparency with your patients, with as many personal touches as possible.

Take advantage of technology to keep patients in the loop, and help them to feel like they’re control of their own health journey. Set up a group via social media to allow trial participants to interact and support one another. You can also use these channels to share information and material about the disease and the treatment.

Make sure that somebody’s always on hand to deal with patient queries outside of the clinic as well. Giving patients a list of named contacts with toll-free helplines can go a long way to put their minds at rest.

Think App

Organising and keeping track of appointments is difficult at the best of times, but clinical trial patients may need particular assistance when it comes to the sudden increase in hospital visits. This is where a custom-designed app can come to your rescue.

Create a patient portal that participants can access from their smartphones, allowing them to arrange and rearrange appointments on the go. Here, too, should be all the necessary information for patients to confidently complete the trial - including directions to the clinic, and a list of key contacts. 

Keeping all of this information in one place and allowing patients to interact with it according to their needs keeps the whole process comprehensive and comfortable.

Start small

By helping your patients out with small things such as transport and consistent communication, you can build the trust that’s necessary for your patients to see the trial through to the end. We have a long way to go when it comes to designing perfectly patient-centric trials, but starting with the details can only improve patient-researcher relationships.

If you need assistance in creating a fully patient-centric service for your next trial, take a look at our life sciences services, from finding the right site to creating a custom app to assist in patient care.

Find out more about the movement toward patient-centric trials with our articles on busting clinical trial myths and getting to the centre of patient centricity.

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