KT Canada Conference – Day 2

 

Day 2 of the two-day conference. More notes from the sessions!

 

Plenary: Andreas Laupacis “Patient engagement in research and health care: its values, science, politics, and art”

  • used the James Lind Alliance process for coming up with their top 10 research priorities for dialysis
    • brings together patients, their caregivers, and clinicians (always as many patients/carers as clinicians)
  • Healthy Debate – adding a section “Faces of Healthcare”, inspired by “Humans of New York
  • MASS LBP – does public consultations
  • he feels even if there isn’t an impact on the final result (e.g., even if the decision isn’t different than it would have been without them there), we should have patients involved in developing health systems & policies, as they are the ones taking the risks of a given treatment, and they are the ones funding the system as taxpayers; however, often the decisions are affected by the patients’ input
  • when you compare the top 10 research priorities on dialysis coming from the JLA process to what’s been published/clinical trials currently going on, and only 18% of the research being done addresses those priorities (though they can’t get anyone to publish this finding – been rejected by 8 journals so far. Publication bias?)
  • some are afraid to engage the public, as it takes control away
  • need to engage a broader array of patients/public – need to make a concerted effort to engaged marginalized/vulnerable populations [bodes well for our presentation later this afternoon on a model for engaging marginalized populations]
  • people often worry about whether we’ll get good enough “representation” of patients – won’t the people engaged be just serving their own interests/agenda… but we don’t seem to worry about that when we engage clinicians/researchers – won’t they too be only able to “represent” their own interests? So while we do want to get more diversity in patients, we ask people to bring their perspective and to listen to others as well
  • Minister of Health in Ontario’s top 3 priorities: equity, transparency, and patient involvement

Workshop: François-Pierre Gauvin, “Engaging with and learning from the public: the McMaster Health Forum’s public-engagement platform to support evidence-informed policymaking”

  • values and experiential knowledge of the public is increasingly being recognized as legitimate evidence to help inform policy
  • evidence-informed policy making = using best available data and research evidence – systematically and transparently – in the time available to influence policy
  • EIPM – challenging because
    • facing complex health challenges (e.g., bringing technical, political, ethical, etc. issues)
    • facing uncertainties about most effective policy options to address the problems and the implementation of the options (e.g., equity, costs, unintended effects, fesability) – research evidence may be difficult to interpret, unavailable
    • often no agreement about how to move forward
  • the public:
    • can help us develop a shared understanding of the problem
    • has experiential knowledge  to help us find innovation and local solutions to complex problems
    • can facilitate or trigger action
  • public engagement = a range of efforts used to involve the public (citizens, patients, service users, family caregivers, etc.) in various stages of policymaking
  • there has been a deliberative turn in public engagement – people coming together, talking & listening to each other , come to more reasoned, informed and public spirited judgements (Abelson, 2010)
  • Health Canada proposed a continuum of levels of engagement

(Source: Health Canada)

  • Abelson, 2010 – we don’t know enough to draw conclusions about comparative effectiveness of different types of public engagement mechanisms (studies on this are diverse and of mixed quality)
  • McMaster Health Forum
    • do a lot of “communications”, but also some “consulting” level
    • their Twitter account
  • small group activity: discuss how we can improve the reach and usefulness of public talks (target audience: 60+)
    • e.g. in New Brunswick, politician who came to discuss government policies re: admissions to nursing homes (e.g., increase cost of nursing homes based on ability to pay) – started session with an advocate for seniors re: nursing homes
      • at the Legion – accessible, good parking, safe, non-political environment
      • Friday afternoon 1-4 pm
      • huge turnout
      • politician listened to the stories – told the audience “I am listening. I will take that back” – politician had to leave, but CARP (organizer of the meeting) left the microphone open and recorded it for the government. Politician did not provide any information about what was actually going to be in the legislation and minimized the input of the audience (e.g., seniors suggested road tolls for revenue, politician dismissed the idea)
      • headlines in the newspaper slamming the politicians
      • no follow up afterwards
  • McMaster Optimal Aging Portal
    • in 2009, 75% of Canadians 65+ use the Internet 1+ days per day
    • 70% of them use the Internet to find medical information
    • created the  Optimal Aging Portal
    • tweet about evidence syntheses related to what’s in the news from @Mac_AgingNews
  • http://evidencenetwork.ca/
  • citizen panels – a forum to get voice of citizens/patients/service users
    • one-day, off the record dialogue
    • bring their views and experiences, read “citizen brief” of the latest evidence, share their new ideas after going through the dialogue
    • people will not participate in this unless they believe that the findings of the citizen panel will actually make a difference – so they set up a relationship with someone who can actual act on the findings
    • Chatham House Rule: “anyone who comes to the meeting is free to use information from the discussion, but is not allowed to reveal who made any comment. It is designed to increase openness of discussion. (Source.)

Oral Presentations:

  • Shannon Scott – systematic review of the use of process evaluations in KT research – a project currently underway
    • process evaluations – study running parallel to or following a trial, trying to understand how the intervention worked and what factors may have shaped outcomes
    • process evaluations explore causal mechanisms in KT intervention studies – but no methodological standards to guide their design
    • Lewin et al, 2009 – BMJ: 339:b-3496  and Grant et al, 2013, Trials: 14:15 (offer some targeted recommendations for cluster RCTs, not a systematic review of the literature)
    • this study wants to explore the state-of-the-science and to look at effectiveness of different process evaluation methods
    • using Mixed Methods Appraisal Tool (MMAT) to assess methodological quality
    • most of the studies collected data *after* the intervention was implemented (surprising, since this is process evaluation); 25% used a theory
    • current doing more analysis – want to ultimately be able to make recommendations for people doing process evaluations along side intervention studies
  • Jennifer Tomasone “In search of “key ingredients”: a multi-level approach to the implementation-effectiveness relationship of an educational intervention for healthcare professional trainees”
    • only 3% of people with physical disabilities are physically active
    • idea was to get healthcare professionals to talk with their patients about being physically active
    • standard curriulum + local adaptations
    • wanted to identify what are the “key ingredients” from this program (since they aren’t all implementing it the same way)
    • used multi-level modelling
    • had presenters fill out form re: their own demographics and what they did during the presentation – originally meant to measure fidelity, but ended up being really useful implementation data for their modelling
  • Holly Witteman – “User-centredness of development processes for patient decision aids and other patient-oriented tools: a measure derived from a systematic review”
    • aids to help patients make a decision (not just to give patients information)
    • preliminary results from their study on describing current practices in engaging users (project has other aspects they haven’t yet done)
    • develop a prototype –> observe them using the prototype (it’s different than asking people what they thought)
    • “If I had asked people what they wanted, they would have said faster horses” – Henry Ford

My colleague, Katie Tweedie, and I gave a presentation on “Including Marginalized Patients in Health Care Services Planning.” I had assumed our presentation would be in a breakout room, but it turned out that all of the sessions were held in the big conference room, so the whole conference was at our session! Throughout yesterday and today, several people were mentioning that we need more diversity in the patients we engage and that we need to talk about power inequities, so I was happy that we were scheduled to present on the tool we created to help people engage patients whose voices traditionally have not been heard in healthcare planning, a model which includes explicit discussions about power. We got some great feedback after the session and I gave out all the copies of the books that I’d brought (since I thought we’d be in a breakout room, I only brought a dozen copies), then gave out a bunch of business cards so people could email me and I can send them the link to download the books. Speaking of which, here’s a link to our handbook & workbook.

To Do:

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