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Cello Health Insight International Market Research Project

10 March 2016

Cello Health Insight is a leading UK-based independent Healthcare Marketing Research Agency. They are conducting an international market research project on Spinal Muscular Atrophy, on behalf of a pharmaceutical company, to explore the experiences of people living with / caring for someone with SMA Type 2 or Type 3, including their journey from initial symptoms, through diagnosis and ongoing management. They are interested in understanding the challenges and unmet needs along the way. From the interviews, information will be gathered to foster a better understanding of Spinal Muscular Atrophy, which may benefit future patients.

Please see below for further information from Cello Health Insight about the interviews.
 

Who would we like to speak with?

We are looking to speak to the caregivers of patients with Type 2 or Type 3 SMA, with a mix of patient ages. By caregiver we mean the person who provides daily support and care for the individual and is likely a parent or guardian for younger patients and could potentially be partner for older patients.

If the patient is able and willing to participate with their caregiver, we would be very happy for them to be involved as well.

  • Type 2 patients (and their caregiver): those younger than 22 and those older than 22
  • Type 3 patients (and their caregiver): those younger than 22 and those older than 22

We are happy to answer any questions or concerns that you or they may have.
 

What does it involve?

If patients and their caregivers are interested in being part of this research, we will ideally be involving the caregivers and / or their child by doing an interview with them and their son / daughter in their home (lasting between 90mins – 240mins). If this is not possible or they do not feel comfortable with this then we will also be conducting 60 minute interviews with the caregiver / adult patient over the telephone, where we may show certain materials via their computer. The interview they choose to take part in will be completely at their discretion.

We would also ask them to complete a pre task prior to the interview, which will take 20 minutes. This will involve dragging and dropping images onto an on-screen timeline and typing comments on their experiences to date.

The interview discussion would be conducted by an experienced interviewer who is sensitive the issues around SMA. Participants will not be rushed, pressured or ‘interrogated’ about their experiences. Should they feel uncomfortable or wish to stop the interview at any time then they are free to do so.
 

Will you be paid anything?

For taking part in the research, ‘pre-task’ patients / caregivers will be offered remuneration (please see the table below) in appreciation of their contribution and their time. Alternatively they can make a donation of this amount to a charity of your choice.

MARKET PRE-TASK

IN HOME
(90 mins / up to 240mins)

60 MINUTE WATI
(Web-assisted Telephone Interview)

UK £15 £150 / £300 £50

 

Will the participants’ details be safe?

Cello Health Insight will ask the participants if we can audio and video record the discussion that we have with them.  We would like to reassure you that Cello Health Insight abide by the Data Protection Act and a range of industry codes of conduct (including BHBIA, EphMRA guidelines), which means the project is entirely confidential and that participants are guaranteed anonymity (i.e. their name/address will at no point be passed on to any third parties) except for disclosure to which they specifically consent. 

In line with all market research procedures this research will be wholly non-promotional and Cello Health Insight will not share the participant’s personal details with any 3rd party. We are a professional market research company and fully understand the need to cater for peoples’ needs especially those that are in a vulnerable position. Approaching the discussion with the upmost consideration and care, we can assure you that the discussion will be kept flexible and factor in time for breaks if necessary.

We would not expect the participant to discuss anything that they are not comfortable in doing so and they are free to end the discussion at any time. We will ensure to collect all various levels of permission from the participant before participation in the research.


What are the next steps?

If you would like to help or require more information about what the project involves, then please contact Nancy McNeil on 01986 784 325 or email NMcNeil@cellohealth.com.