This talk is called

Spinal Cord Injury Consumer Engagement in Research

She starts with some learning objectives:

  1. identify functions of high priority  for us, the sci consumer population
  2. describe risk/benefit decision factors important to the population
  3. discuss strategies to employ sci consumer engagement

So what does engagement in research mean? Could be lots of things. E.g.:

  • it’s being a research participant
  • helping select topics
  • design studies
  • conducting studies
  • dissemination of results = spreading the word, even to your own doctors

Why does this matter?

  • you can help guide research to be more patient oriented
  • make it more clinically relevant and useful
  • increase trust on all sides
  • improve uptake so that everyone has access
  •  help set research priorities

How do you identify functional recovery important to people living with sci? You ask them what they care about. Dr Anderson is the person who led a 2004 study of 681 people that showed how many things we care about more than walking. (arm/hand function, sexual function, bowel, bladder, trunk stability … the list of things we’d like before walking is long.)

Autonomic function recovery is a high priority across all injury levels — and there have been 5 studies since then that all show the very same set of priorities.

A spinoff study from the first one was done in 2007 — 90% of people were involved in sex pre injury, and that number fell after (sorry, didn’t get the number before she moved off the slide). 32% of subjects got AD during sex, and 20% said it interfered with sex. AD during bladder or bowel care is a predictor of AD during sex and AD interference with sex. We don’t know how prevalent silent AD is. We don’t know anything about the long term repercussions of repeated AD.

What Are the Barriers to Exercise Participation, 2013 study:

There are both interior and external barriers (laziness, not knowing how, not knowing where, not being motivated are all examples of interior barriers.) More than half the people reported that their doctors had told them to exercise, but less than a quarter had gotten specific instructions from that doctor telling them exactly how or what to do. Not exactly helpful.

Not having equipment at home reduced the odds of being an exerciser by 68%.

Lack of transportation wasn’t a problem for most people in the survey, but not knowing where to find an accessible fitness center was.

Risk v Benefit — she’s moving on to talk about how our community has weighed the cost of engaging with new technology against the possible benefits from doing so.

There was a survey about surgery to improve arm/hand function done with 137 people in 2009.

I’m looking at un-seeable dense graphically presented info, which is frustrating. It looks like one big takeaway from this survey is that people were generally willing to take the risks of tendon transfer surgery, but less and less as time passed. Meaning, during the first year post injury, a lot more would do it, but as years went by that number would fall. There’s a big cost to doing it in terms of time, because it takes a while to recover from this surgery — several weeks of having LESS hand function in exchange for having MORE afterwards.

Moving on to the design of neuroprosthetics – 2015 study of 156 people — they asked people about implants —and found that mostly they’re wiling to have this kind of therapy IF it will give them back something they care about.

Another study about readiness for cellular therapy — thoracic folk more prepared to go for it, cervical people more risk adverse.

The main takeaway is that people are willing to undergo risk for potential incremental improvements in functions that are of high priority to them.

So how can we the community participate in trial design?

One issue is enrollment — how to get more people to participate? Level of participation impacts many aspects of trials. It’s not the case that every person with SCI wants to do it, wants to be the first … We’ll need to be proactive in getting people on board for the future. We’ll need multiple phase 3 trials, and they’l have to be multi-national.

What is going on with people who qualify but choose not to participate? People were asked in a survey which factors impacted their decision to be in a trial …

That study identified 32 factors, and tracked them along with demographic factors. There were 769 people in the survey. They were analyzed by gender, injury level, current age, injury duration, and country of residence

They found that some factors are “universal,” by which they mean that more than half the people in each subgroup agreed on them.

(You can have a look at the abstract of this paper here.)

Some of the universal strong facilitators, meaning things that people said would make them likely to be in a study:

  • improve function, increase independence
  • increase knowledge
  • altruism (help others who come after me)
  • family support
  • recommendation from peers and personal physician

And some of the universal strong barriers to participation were:

  • possible decrease in function
  • impact on income, medical coverage
  • out of pocket expenses

Then there evenly split factors — things that some groups saw as positive and others as negative … for example, among Asians “being a guinea pig” was negative, but positive in other populations.

Some — but not all — people also reacted negatively to the possibility of being in a control group.

The point of all this is to understand way ahead of time exactly what makes people in our community willing/not willing to be in a clinical trial. There will be more and more trials as scientists close in on what needs to be tested in people, so it makes a lot of sense to have a feel for whether or not they’ll take the opportunity or not.

We must have a North American SCI Consortium

Purpose: bring together the many organizations in North America that advocate for, represent or communicate with people living with SCI to provide a platform for shared goals to the larger community.

There’s no need to reinvent the wheel, because we can follow the European SCI Federation model.

That group started 2005 with 12 countries; in 2016 it has 30 organizations from 26 countries, written policy statements, and annual meetings to share and disseminate information.

We can also look to the patient-focused organization called Faster Cures, which has lots of resources for us, and the MJ fox foundation, which has a thing called Fox Insight — an online data collection site for people with Parkinson’s.

Her summary:

  • lots of info has been and will continue to gathered from the SCI community itself
  • that information must be obtained in a reliable and useful format
  • it can then be used to inform and target research
  • being engaged brings your voice to the table

More about Kim Anderson, her work, & her contact information here.

And that’s it! The group will break into table discussions now, and after a set of breakout sessions, the conference officially ends. Thx for playing.