Milestones: In Life and Research Patient Engagement

by Imogen Cheese
Research patient engagement

This year, I reached a milestone I was never expected to achieve. June 11 marked my 10-year “cancerversary” – the anniversary of my cancer diagnosis, the date of the first of many surgeries, and the date that my world changed completely in just a few minutes. I hope sharing my story puts some context around the patient experience and provides insight for maintaining research patient engagement.

Celebrating a Milestone

I spent this anniversary surrounded by my family. We enjoyed a wonderful lunch, and throughout the day, I was either in tears or had an enormous smile on my face. I spent a lot of time reflecting on everything that has happened in the last 10 years that I can be thankful for:

  • I built a house with my husband (and despite having to navigate my cancer journey together, we still very much like each other!)
  • I watched my two amazing children grow and spent 10 birthdays with each of them that I hadn’t thought I would be able to.
  • I have shared in my children’s milestones and remain delighted by all the little things that add up over time.
  • I have blogged, spoken at events, raised awareness, and generally advocated continuously for the patients amongst us.
  • I founded a national conference dedicated to patient awareness for melanoma, bringing 300 patients and stakeholders together every year to provide a happy mix of knowledge and hope.
  • I became a trustee of a charity committed to improving the lives of the patients we support.
  • I have traveled and vacationed in many countries, working through my seemingly never-ending list of places I want to visit.
  • And I joined a company where I experience a huge sense of satisfaction every day.

My cancer experience has taught me to keep track of the passage of time and to view key events and milestones as beacons of hope. Milestones are important life events—and important time points in clinical trials. Expressing gratitude for participant involvement throughout the clinical trial, especially at milestones, can help maintain research patient engagement.

Milestones are Opportunities

Meeting a milestone is an achievement, and recognizing participant milestones is an often untapped opportunity within our industry.

Last year I interviewed five patients who took part in oncology trials (trials Imperial was not involved with). They were grateful to participate because the drugs or treatment gave them hope, and some said it provided them with additional time. However, none of them received any kind of thanks for participating in their trials. Their participation went unsung. There was no appreciation, no feedback, and little communication. One received holiday cards which were well received. All said they would have appreciated comfort items, tokens of appreciation, or thank you cards.

Clinical trial patient engagement and participation could gain momentum and be viewed more positively if participants could tell their friends and family that they felt appreciated.

A Simple Way to Boost Research Patient Engagement

Greeting cards are simple, tangible ways to say thank you or recognize a milestone. Patients face enough challenges in daily life – just like the rest of us. They step forward and agree to participate in a clinical trial, and sometimes that is challenging. Amidst the blood draws, ECGs, exams, and the time participation takes, thank you cards reinforce appreciation and gratitude for the participant. Cards can put a smile on the participant’s face and even make their day a better one. Custom cards with the study logo and branding are especially impactful.

Tokens of appreciation make the participant feel included, valued, and more than just a number. This appreciation and acknowledgment may help keep the participant engaged to remain in the trial to the next milestone.

Providing a certificate of completion at the end of study participation (and perhaps a small token gift) is also an effective way to recognize how important their continuation has been.

The Imperial Advantage

Patient support doesn’t need to be complex or expensive. Here at Imperial, we create many engagement items, including greeting cards, thank you cards, and milestone cards.

We also provide simple comfort items. These items offer support and are especially impactful when participation might be complicated. For example, requiring many site visits or overnight stays.  Something as simple as a water bottle or a blanket can help make a participant feel appreciated during a study visit.

Let’s talk about effective ways to enhance research patient engagement and make your participants feel appreciated and motivated. Contact us for more information.

Photograph: Imogen enjoys dinner with family on her 10-year “cancerversary.”

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