Creating conditions for meaningful and safe research participation Kelly Ann McKercher @kellymckercher

Customer experience We spend a lot of time talking about it…

What about the research experience? How often do we focus on understanding and strengthening it? When was the last time you researched, research?

As  a  researcher,  I  listen  to  many  different  stories  –  stories  of  delight  and  success  but  also  of  hardship,  frustra:on  and  disappointment.      I  play  the  role  of  a  custodian  of  their  stories  and  most  importantly  of  hope  –  that  things  will  improve,  someone  will  listen,  that  the  services  they  have  to  use  in  their  everyday  lives  will  be>er  meet  their  needs.  Some:mes  I’m  comfortable  playing  that  role,  other  :mes  I’m  not  –  when  the  condi:ons  haven’t  been  set  to  ensure  meaningful  par:cipa:on.      When  par:cipants  feel  disappointed  or  disempowered  through  their  par:cipa:on.    

How might we increase the value and meaning of research activities? (For participants and funders)

The problem

Brand and perception damage can be done by offering our people (employees, suppliers, customers, citizens, partners or communities) a poor research experience.

•  Loyalty & advocacy •  Usefulness & meaning •  On-going willingness to help (you don’t listen,

why would I help?) •  Final decision legitimacy & acceptance

Poor research experiences decrease:

Sincere Active Safe

wants to listen, cares

tries to fully engage participants

doesn’t cause harm or disempowerment

Mindsets

People deserve to play an active role in the decisions that shape their lives

People immersed in a problem are ‘competent interpreters’* of their own lives

*  Geoff  Mulgan,  The  Art  of  Public  Strategy  

Research participants are more than ‘subjects’, they are valued and essential partners

It’s up to us to empathise with, understand and create the relevant conditions for our participants

Every study, no matter how brief – should be carefully considered

Sincere Active Safe

Sincere Active Safe

We can put up barriers to participants feeling easily able to be themselves and express themselves fully in a research context – what can we do?

Meet people on their terms, not ours

1.

“When and where is best to engage with you?” We often make assumptions and organise research around our own schedules and preferences

Imagine  you’re  invited  to  contribute  ideas  on  your  communi:es  development  –  to  be  held  at  this  charming  place.      Who’s  excited  by  the  prospect  of  visi:ng  a  council  chamber  to  talk  about  the  future  of  your  community?  Your  family?  Yourself?    When  you  see  this  image,  how  do  you  imagine  being  in  a  space  like  this  might  make  you  feel?  Comfortable,  open,  able  to  express  yourself  fully?  No.    

What  about  being  invited  to  a  session  (one  on  one  or  as  a  group)  at  a  corporate  office.  Maybe  you’ve  never  been  to  such  a  fancy  building,  or  perhaps  you  simply  have  an  allergic  reac:on  to  such  places.  Or,  just  maybe,  it’s  culturally  inappropriate  to  talk  about  a  topic  e.g.  health,  in  such  a  place.      Does  this  strike  you  as  a  space  that  inspires  crea:vity  and  openness    of  thought?    

The  physical  environment  we  choose  to  approach  people  in,  has  a  lot  to  do  with  they’re  able,  or  to  par:cipate  in  a  way  that’s  meaningful  and  comfortable  for  them.  On  their  terms,  not  ours.      The  most  successful  public  and  private  sector  organiza:ons,  those  who  achieve  greatest  engagement,  recognize  they  have  to  go  where  people  are…  not  expect  people  to  come  to  them.  They  recognise  they  need  to  work  hard  to  hear  the  voices  of  people  who  won’t  go  out  of  their  way  (like  the  vocal  minority  will)  to  make  their  opinions  known.      They  understand  significant  barriers  oUen  exist  for  people  to  travel  far  from  their  homes.    

•  Where are your people? •  Where do they belong? •  What spaces are comfortable

for them? Comfortable participants are the best kind of participants

Make participation easy

2.

Auckland Council Embedding participation in people’s everyday lives – increasing reach

Research and protoyping where the customers are – alluring with fun prototypes

Nordstrom

Sweat the small stuff

3.

Par:cipants  know  we  actually  care  for  them,  when  we  not  only  focus  on  the  large  factors  of  their  experience  –  like  the  venue,  the  research  ac:vity  itself,  but  the  small  things  too…like  parking,  hydra:on.    

 I  interviewed  a  group  of  professionals  who  had  been  involved  in  a  pilot  for  a  new  programme.  They  had  been  invited  to  an  evalua:on  session,  when  they  got  there,  it  was  dark…  there  were  very  few  parks,  they  drove  around  and  around.      Following  a  session  that  went  far  too  long,  they  walked  out  into  the  rain.  Their  parking  hadn’t  been  paid  for  so  around  100  of  them  queued  up  in  the  cold  and  wet  to  use  the  two  pay  sta:ons  available.  Everyone  went  home  wet,  cold  and  pissed  off  by  the  overpriced  parking.      When  we  asked  about  these  people  about  their  overall  experience  of  the  programme,  this  experience  was  top  of  mind…  it  gave  them  the  impression  that  this  organisa=on  who  wanted  their  help,  didn’t  really  care.    

“Show us you respect our time”

Set clear expectations

4.

“When are they going to make the changes?”

“Why are they asking for our feedback? Everyone knows they just do what they want”  Disappointment  and  missed  expecta:ons  are  acid  to  rela:onship  building.      

 As  an  organiza:on,  when  we  carry  out  a  lot  of  research  and  do  very  li>le  as  a  result…  we  erode  our  people’s  sense  of  trust  and  subsequently  their  willingness  to  engage.  Who  likes  to  talk  when    they  aren’t  listened  to?      When  we  a>empt  to  do  more  research,  our  future  efforts  are  met  with  suspicion,  people  are  unwilling  to  help,  even  with  the  incen:ve  is  juicy.    

“Be honest with us”

•  Purpose •  Expectations, what is their role? •  Level of influence (what can be changed) •  Constraints There  are  :mes  when  par:cipa:on  isn’t  the  right  approach  e.g.  it  would  be  bad  to  set  up  a  research  ac:vity  to  try  to  legi:mize  a  decision  already  been  taken  behind  closed  doors  and  par:cipants  are  misled  into  thinking  they  can  affect.  If  you’re  struggling  to  work  out  how  to  explain  something,  or  it  sounds  bad,  doing  research  might  not  be  what’s  needed.    

Communicate:

5. Prove commitment through action

“Show us you’ve listened to us”

CDHB Following patient research, CDHB showed patients prototypes created based on their feedback – patients loved seeing they were listened to.

•  Make s#!% happen •  Share research outputs

(reports, prototypes etc.) •  Communicate planned

actions

“When people know you’re listening and designing based on their feedback they’ll go out of their way to help” Jay Acunzo

Sincere On their terms and easy Small stuff considered Clear expectations Committed to action (wants  to  listen,  not  just  talk)  

Sincere Active Safe

(Ac:ve  communi:es  of  staff,  customers  and  ci:zens  aren’t  build  from  a  one-­‐off  session  basis.  Instead,  they’re  build    from  inves:ng  in  rela:onships)        

“How can we engage with you during this process?”  Not  all  par:cipants  want  to  be  ac:vely  involved,  however  some  do  and  can  add  a  huge  amount  of  value  over  :me.  It’s  up  to  us  to  invite  them  into  our  process  and  make  it  theirs  to.      

1. Involve participants in designing the approach

1. Involve participants in designing the approach People  who  live  or  work  in  the  environment  we’re  studying  have  invaluable  insights  about  how  to  get  the  most  out  of  par:cipants…  they  have  rela:onships  and  protocol  knowledge  that  we  don’t.  Importantly,  they  can  tell  us  when  research  won’t  be  welcomed  and  may  not  be  needed.      

“Involve us early”

Co-design the approach

For  example,  run  a  co-­‐design  workshop  –  with  the  inten:on  of  designing  different  ways  research  ac:vi:es  could  be  carried  out  with  a  given  group,  from  loca:ons,  recruitment  methods  to  research  ac:vi:es.      When  an  Australian  university  studied  instances  of  abuse  with  those  with  intellectual  disabili:es,  they  had  those  with  intellectual  disabili:es  form  an  research  advisory  board  at  the  start:  helping  to  shape  the  research  and  ensure  the  safety  and  appropriateness  of  the  approach.      Involving  would-­‐be  par:cipants  in  designing  an  approach  supports  disengaged  groups  to  regain  a  sense  of  power  and  control  –  of  course  this  relies  of  us  surrounding  our  control  and  ensuring  we  follow  through  our  inten:on  with  actually  doing  the  things  they  suggest.  If  there  are  relevant  constraints,  let  the  group  know  early  –  they  can  help  you  be  crea:ve.      Hiding  them,  and  introducing  them  later  as  a  way  to  defend  a  change  of  plans  will  just  invite  suspicion  and  disappointment.      

“How might we do this research with you?”

R-E-S-P-E-C-T 2.

Are we best placed to do this research? What  is  our  level  of  power  and  influence  rela:ve  to  the  person  we  want  to  talk?    

Torres Strait

 In  Torres  Straight…  the  indigenous  community  made  a  stand  against  being  research  objects  for  external  and  mostly  non-­‐indigenous  researchers.      They  demanded  a  role  in  decisions  about  what  is  researched…  and  how  it’s  researched.      Researchers  responded  by  training  community  members  as  community  researchers,  so  they  could  conduct  research  with  their  peers  –  in  a  way  meaningful  and  appropriate  for  them.      Training  workshops  on  qualita:ve  research  methods  were  held  to  prepare  the  community  researchers.  The  indigenous  researchers  collected  community  data  and  worked  in  partnership  with  experienced  academic  researchers  to  analyse  and  compile  community  reports.  In  this  process,  they  learned  from  each  other.      Although  the  community  members  were  novice  researchers,  they  were  respected  members  of  the  communi=es  in  which  they  lived  and  worked,  with  rich  understandings  of  local,  social  and  cultural  norms.    

“This research was community owned; the information that was developed, the community took ownership and it became theirs.” Kelly et al: “Makes you proud to be black eh?”: International Journal for Equity in Health 2012 11:40

Active Involved in the approach R-E-S-P-E-C-T (considers  who  people  are,  who  we  are  in  rela:onship  to  them  and  subsequently  finds  an  appropriate  approach)    

Sincere Active Safe

Be careful ‘just getting out of the building’

1.

Be careful ‘just getting out of the building’

1.  The  Lean  UX  /  startup  method  has  gained  popularity  over  the  past  years…  encouraging  us  to  ‘get  out  of  the  building’  and  talk  to  people.      Some:mes  (not  always)  this  means  ‘talking  to  people’  isn’t  well  considered  or  planned.  All  research  should  be  carefully  considered,  the  poten:al  impacts  our  ac:ons  may  have  –  whether  the  ques:ons  we  plan  on  asking  will  evoke  pain,  stress  or  anxiety  in  the  people  we  ask  them  of.      This  is  especially  true  when  talking  to  vulnerable  groups,  or  about  sensi:ve  subject  ma>ers.  E.g.  health,  jus:ce  or  other  situa:ons  that  may  possess  trauma  or  the  poten:al  for  harm.    In  these  situa:ons,  addi:onal  care  (and  inevitably  :me)  is  needed  to  ensure  a  carefully  considered  approach  that  promotes  the  safety  and  informed  consent  of  all  involved.      If  you  open  Pandora's  box  during  a  session,  how  will  you  put  the  lid  back  on?    

•  Are we trained in crisis management?

•  Do we have clinical / spiritual / community support?

First, do no harm

Set a safe container for participation

2.

Personas Give people a way of talking about themselves, without talking about themselves

In group settings people can work as individuals, write down things they don’t want to share or talk about.  

Individual time

No paparazzi

Inform (fully)

3.

•  Expectations •  Level of influence •  Potential impacts •  Sought in advance (not 10 mins before the session)

•  Plain English

Follow-up and evaluate

4.

How  oUen  do  you  evaluate  the  research  experience?        

“Show us you’ve learned and adapted”

•  Did they feel listened to? •  What were their expectations

before / during / after? Were they met?

Include the perspectives of all involved

Safe Carefully considered Safe container Informed consent Evaluated

Summary

It’s up to us to empathise with, understand and create the relevant conditions for our participants

What are your research motivations?

Quality? Accountability? Empowerment?

Thanks! Kelly Ann McKercher @kellymckercher