Planning for Hope: Follow-up Interview with a Study Subject
Authored by Sherry Reuter
The follow up…
A few weeks ago, one reader commented on the list posted from my interview with a study subject, saying she:
“ …wished the patient had gone into more detail on some of her positive experiences. While we can continue to learn from these awful experiences, none of us think WE would ever commit these thoughtless (and some borderline or outright non-compliant) incidents. But knowing what makes a truly positive experience for a patient could perhaps help us appropriate budgets more realistically, train staff more specifically, or create innovative motivational opportunities.”
This comment is absolutely right, and it prompted me to get back in touch with the person I interviewed. When I relayed our reader’s comment, the interviewee responded:
“What a great question. I think it is so valid, I feel funny I didn’t include the do’s the first time. I really want to put some thought into it. I do know I would not be alive today without medical research. I have such a positive view about it that when I named the documentary I filmed I named it ‘Planning for Hope’ because this is what clinical research gives us, which is so important.”
“I have an appointment this week for a clinical trial that I have been in since 2003. The fact that I stayed in this study for so many years shows that they are doing a lot of positive things. I will think about this during my appointment this week.”
She went on to tell me that participating in clinical trials has given her access to some of the best specialists in the area she needs, sites with some of the newest diagnostic equipment in the world, and people doing some of the most leading-edge work in medicine:
“Being in clinical trials has had many advantages. I have benefited from sites that have the best equipment in the world and people who are doing leading-edge work. Here are some wonderful things that have happened to me from participating in clinical trials and as a result of being involved with people I have met through them.”
- - An investigator from one of my previous clinical trials was the first to diagnose my condition. He had a scanner that played a role in finally making my diagnosis.
- - The study site for one of my clinical trials has a new PET Scanner that is the largest and most sophisticated in the world, which makes a big difference in my case.
- - One investigator spent a total of 4 hours talking to us after a visit that lasted an entire week.
- - An investigator for one of my previous clinical trials met with me for lunch when I was in town.
- - I have met an investigator running a trial on investigators and study subjects (not just their caregivers) using Social Media, a leading edge concept I get to be involved with.
- - Another person I met through participating in clinical trials did a trial which led to the development of software that I use.
- - I get hugs from many of the site staff from my clinical studies – genuine great people!
She has offered to send us more information after her study visit – about the good and the not-so-good, but knowing that clinical trials are one of the main sources of hope.
About the Author
Sherry Reuter is President of Sherry Reuter & Associates, LLC, a consulting firm that focuses on the conduct of clinical trials, Site Selection, Study Start Up, Training, and Patient Recruitment and Retention. Sherry may be contacted at firstname.lastname@example.org or 203.775.6031.