creating conditions for meaningful research participation
Post on 21-Aug-2015
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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
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