Voice of the Patient - Is Anyone Listening?

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For too long healthcare manufacturers have focused on healthcare professionals (HCPs) to provide feedback and to help develop products.   The actual end-user, the patient, has practically been ignored.  This approach has now changed dramatically to allow the patient to have a say in what manufacturers develop and how it is delivered.

The availability of healthcare information on the Internet has been both welcome and disastrous for the medical profession.  Enlightened patients can provide both challenges and opportunities.  The opportunity that people can take more control of their own health if they wish to do so is very attractive to healthcare providers.  Alternatively people can access, through no fault of their own, spurious and inaccurate information on the Internet, which can waste much time at a GP consultation.  Overall a better-informed population is thought to be a positive move for healthcare.  The enormous challenges faced by the NHS and other healthcare systems with growing and elderly populations requires a radical rethink of how governments fund and meet these needs in the twenty-first century.

1.         Patients

So how do manufacturers connect with patients?

  • Manufacturers can connect with patients in a variety of ways and one of the primary methods is to connect through Patient Associations.  They can provide advice on limitations that may need to be considered when dealing with specific patients.
  • Another method to connect is to meet up with patients who, more frequently nowadays, attend medical conferences.  The “patient perspective” is often a useful presentation provided by conference organizers.
  • Patients can also be recruited by market research companies to provide feedback on specific topics.  Often this is achieved by using a healthcare professional as a conduit.

Some (but not all) of the information patients can provide?

  • Product effectiveness – direct rather than via pharmacovigilance
  • Product improvements/benefits
  • Patient journey – roadblocks in the process
  • Patient motivations/compliance
  • Patient relationship with healthcare professionals
  • Future product development

2.         Factors to consider when conducting market research with patients                  

The nature of the condition has to be considered - the more life threatening or debilitating the condition, the possibility of more emotional a respondent’s reactions to the condition and related issues.  However, respondents with seemingly less-threatening conditions may also need to express their feelings.

  • Plan time to address the issues.  Anticipate that at least some participants will need time to express their fears, hopes and general feelings about the condition.  Allocating time for participants to express their feelings early in the interview allows them to move beyond their emotional reactions and be a more effective participant in the main part of the interview.
  • Be prepared to show personal empathy.  Respondents whose emotions are close to the surface may not be able to control them, even in an interview setting.  Expressing empathy provides an opportunity to create a bond with the participant.
  • Consider the human aspect when choosing a methodology.  Respondents who share a condition often bond with each other very quickly in a group setting.  The need or desire to share experiences can overwhelm the group and make it difficult to keep a discussion on track.  If the goals of the research do not require a group, one-to-one depth interviews may be a better choice.

Recently diagnosed patients and longer-term patients. 

  • If possible elicit information about diagnosis and progression during the screening process.  Directly explore these issues at the beginning of the discussion.  The opportunity to explain their current diagnosis and express their feelings about it can provide important information for the research.
  • In focus groups, consider placing recently diagnosed participants in a separate discussion.  Recently diagnosed patients may ask more questions than longer-term patients or show confusion about their condition, treatment options and prospects.  This can slow the pace of discussion.

Varying physical capacities.

  • Research participants with some diseases/conditions are physically handicapped or have varying physical capacities depending on how they feel day-to-day.  This latter group can be particularly difficult to identify because their handicap is not always visible.
  • Be prepared to accommodate participants’ basic physical needs.
  • Be prepared for varying respondent energy levels.
  • Keep materials to be reviewed and exercises as simple as possible.
  • Show empathy and appreciation for participants’ efforts.
  • Ask recruiters to note observable characteristics or volunteered information, even if the issues are not on the screener.
  • Be prepared to adjust the tone of each interview to meet the requirements of specific participants.

Extra time and care are required for qualitative research with medical participants.  It is often more complex because of physical and emotional limitations.  Good planning and recruitment will be an advantage and at all times empathy is the most important factor.


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