Help With RA Treatment Decisions: ANSWER-2 or a Decision Aid

My friend commented last week that in 30 years with RA she had never seen the new and far more helpful type of pamphlet or booklet called a Decision Aid. My experience was the same as hers - the only time I ever saw a decision aid was during training to be a Peer Mentor, so that I could be an advisor to people who were newly diagnosed. Decision Aids are are much more useful than an informational pamphlet.

Now imagine how useful it would be to have an interactive decision aid. That's ANSWER-2, a new tool to help patients make decisions about starting a new drug or staying on their current treatment if their doctor has recommended a biologic drug. Right now it is at the prototype stage and it is being tested against a decision aid. The researchers and patients who created it are conducting a randomized controlled trial. If you join you will be testing either ANSWER-2 or the paper based decision aid.

Background
When I was finally diagnosed with RA it was almost two years after I first developed symptoms. At that time I assumed that getting good treatment from a specialist would make me better. I was wrong then, though the treatment did help. The good news is that better results are more likely to happen now than in the 1980's
I was so sick at that time that I believe I would have taken any medical treatment suggested by a doctor to get my life back to what it had been like. I knew next to nothing about rheumatoid arthritis itself, let alone the possibilities for treatment so I did exactly what my rheumatologist suggested.

Things are different now

Before the internet was available to us all, information was scattered and hard to put together. The facts I knew did not form part of a big picture. My doctor would talk about possible new treatments but my part in the decision always slowed down the process by months because I had to find and learn what I needed to know.

It was a puzzle, not a big picture.

When I heard of a way that would help me to make important decisions I was really excited by the idea. Now that a Decision Aid can be an online interactive tool it can be a whole new ball game!

Here's what happened: 
I had reached the point where my doctor suggested it was time to think about a change in the drug I was taking for rheumatoid arthritis. After 30+ years with RA and 8 years on my previous drug, it no longer seemed to be working. 

That made me a candidate to try ANSWER-2 so I volunteered. It was developed by Arthritis Research Canada (ARC) as a research project funded by the Canadian Institute for Health Research (CIHR), and is based on scientific evidence, not information from manufacturers.

That background helped because with government funding I knew that the intention of the tool was not to promote a particular drug. It was also reassuring to me that patients were involved in the development of ANSWER-2 and participated on the research team. 

The program started by asking me about my priorities and what I thought was most important. It helped me to balance the convenience vs my anxiety about a change vs worries over starting a new drug. This was exactly what I remembered going through the first time in other decisions about new drugs.

So with those personal preferences entered, the next area dealt with the potential treatments - On to the decision area! When I saw the possible choices I found that they were ranked in a way that made perfect sense to me.

This is what the first page of ANSWER-2 looks like. Sorry it's little small.

Another benefit in using it was a description of the drugs and the comparison of the risks and benefits of each one laid out right in front of me in columns. That really helped me with my choice.

As I went through the screens I could also watch stories from real patients as a part of the program (I even knew one of them).

Since this is a prototype more people are needed to test it. At this moment the trial is only available in Canada and the US. Participating in the trial will help the investigators learn whether ANSWER-2 or a standard decision aid is more empowering to patients.

To try this out it you must have rheumatoid arthritis and be considering a decision about biologic therapy - whether to start t or to change to another drug. If you are eligible you will randomly be assigned to either the online ANSWER-2 or else a Medication Guide in a pdf version. If you test the pdf you will have access to the online version at the end of the trial.

Click this link to apply if you are in Canada. The heading on the page is "SuPER: Supporting Patient care with Electronic Resource"

OR

For US users please contact Sharan Rai at SRAI1@mgh.harvard.edu to enroll in the trial.

For US and Canada: 


To learn more, please contact Jasmina Geldman at jgeldman@arthritisresearch.ca or 1-877-871-4575. She can answer all of your questions.

Focus Group Ground Rules:Should They Apply When You Consult Patients?

When you are asked questions before you start a survey, or before you are invited to a focus group for market research you might notice that you are almost always asked a few questions before you can start the survey or be invited to a focus group.

Imagine the topic is banking. You'd be asked:

Do you or does anyone in your family work now or in the past in market research, advertising or media?
Do you now or did you ever work for a financial services provider?

If you said yes to either you would not be invited.

These are the basic questions and they're designed for two things. Sometime to keep the client's competition from learning about the client's plans or to ensure that the other focus group participants are comfortable voicing their opinions.

Focus Group

In the 20 years I spent organizing focus groups this never changed. We often asked our clients for clarification, or a bit of stretching the boundaries to make our job easier but this was never an area where there was flexibility.

When we asked for exceptions the answer we got was this:
As we go around the table and give each person a chance to speak and give their opinion, the dynamics of the discussion change dramatically after someone who is considered an expert gives an opinion on the topic of the group

No one wants to be at odds with the person who is seen to know more than the others because of experience. The person who 'knows the topic' has an overweight influence on the discussion whether they mean to or not.

I heard this point of view from another perspective at the HCSMCA Unconference in Vancouver. In a conversation with Dr. Paul Dempsey he talked about setting up a Moms group on his website so parents could support one another. He found that a lot of the wisdom of  'Dr. Mom' flowed among the participants - until he stepped in. The conversation stopped when he (the expert) started to take part.

This can make a difference when organizations, government or organized groups try to hear from patients. 

Everyone's opinions are valid, but I would suggest that when there is a broad range of experience among patients, especially when some of the patients are or were health care professionals or health care workers, that holding separate focus groups would produce a better range of opinions and include more voices.

Patient Groups - Hard Work and Lots of Questions

Last week I attended the CADTH symposium in Ottawa as a member of the Sjogren's Society of Canada.

You might wonder exactly what CADTH is and why I would want to attend. The Canadian Agency for Drugs and Technologies in Health (CADTH) is an independent, not-for-profit organization that provides public healthcare decision-makers with evidence about the appropriate use of drugs and medical devices. Patient input is used in deliberations and decisions.

It is becoming much more important in health care to have the patient, caregiver and public point of view and we see organizations making changes because of this.  Sarah Berglas of CADTH pointed out that 5 yrs ago they asked clinical experts what was important to patients. Now they are asking patients for this information.

To make it easier for patient groups to take part CADTH provides templates and sample submissions on their website to help them.

One of CADTH's aims is meaningful involvement of patients and patient groups in the drug review process.

I heard two important comments about patient submissions:

"Patient experience brings the disease to life" -- Fiona Miller

“The review team has often never met a patient with the disease” -- Frank Gavin

At one of the panels at CADTH, Zal Press of Patient Commando suggested that out of 1682 patient groups, only about 18 have the capacity to make submissions to CADTH to be considered by the Common Drug Review.

Questions that came up: 

How much thought is being given to the cost in terms of time and energy that it takes the patient group to do this?

How can patient groups running on a shoestring with few resources do a drug submission effectively?

Is this small number of groups who make submissions a good representation of the voice of patients and the public generally?

What about the idea of independent financial support for patient groups?
Are we asking too much of patient groups? We invest in clinical evidence, why not patient evidence?

Just the facts? 

Dr Ahmed Bayoumi, who is a member of the Common Drug Expert Committee, asked in the panel whether patient groups have the agency to speak for their patients. 

Dr Bayoumi said with patient submissions the decisions made are better decisions - that statement left patients in the room with questions. How do we know that our submissions really have an impact and can possibly change a decision?

Barry Stein of the Colorectal Cancer Association of Canada said he is disappointed that patient experience is most often used to enrich, rather than change, reimbursement and coverage decisions.

Are patient groups working so hard on submissions for drug after drug, just so that the decisions made in meeting can be “better”?

What about the reality that qualitative research and experiential results are heavily discounted in favour of ‘real' evidence from trials and quantitative research?

How often do we call patient experience evidence? Why do we not call it patient evidence? -- Frank Gavin

What terms do we use to describe patient input? Information is a neutral term, but patient information is not seen as data -- Frank Gavin

The panel talked about evidence vs advocacy. We are dichotomizing this form of evidence. How do we incorporate it?

Gail Attara said that understanding the patient perspective is important. "Is a fifth medication for a condition needed?" She answered Yes, if you are a patient for whom the first four didn't work. Also that the patient's individual goals and decisions may not always follow evidence.

Sarah Berglas: Need to work with patients to capture big ideas on acceptability of treatment, "how life is lived, not just survival"

Those of us attending the panel discussion got concrete advice on making our submissions  to the Common Drug Review have more impact and be more useful.

1.     Discussing unmet needs and quality of life is very relevant

2.      Be very specific about therapy, side effects and challenges e.g. efficacy decreases over time.

3.      Include numbers if we have them

4.      Include strong quotes that "hook into people's brains" and illustrate the authentic voice of the patient.

Advice to patient groups on submissions: Be specific in what you include and pick powerful direct quotes. Sarah Berglas, Patient Engagement Officer, CADTH

Ducks in a row

Advice for patient groups from Gail Attara from badgut.org

If patient groups could make submissions in person it would be more satisfying. Why can't patients comment on draft reports like other experts?

Patient group submissions are heavy on quotes, testimony and voice. Patients have the feeling that lived experience can’t compete with clinical data when the end result is up to the funders. Some patient groups wonder how much of  a difference their input makes.

There is a need to develop patient capacity.

I'm always conscious that patients have no strong networks to enable us to stay in touch and connect in between events like CADTH.

HTA provides the facts: ethics judges the facts. All who are affected need to be heard. Are patient values represented in HTA?

There is limited operational (action-oriented) guidance to assist HTA with the evaluation of ethical issues.

Even at the Plenary we heard this question: How do patient groups organize so they can feed into changes within the health care system?

A slide from Dr Ahmed Bayoumi's presentation

Arthroplasty of the MCP Joints (New Knuckles)

If you had rheumatoid arthritis (RA) diagnosed in the 80's, or if your RA has been very aggressive, you might know the meaning of the title. Otherwise it sounds like medical jargon that you need to go home and google. As an involved patient I always want to know what medical language means.

The story starts with a surgeon who must have been tired of describing procedures to patients. He put up a hand to stop my questions at the first visit, when he laid out a plan that ultimately involved straightening my fingers. 

However when he said this process would take 3 operations that was the end of the road.  With a full time job I could not afford the time to have that much surgery. His plan was to fuse both wrists and then straighten the fingers - I found out on my own that this is the best way to proceed. His explanation of his reasoning was not 'patient-friendly.'

Once I retired I was able to take the time to start with surgeries. The results of operation #1 were very successful, so after a year I went back to have a second wrist fusion. With both wrists immobilized and with the new found ability to turn my hand palm up, I was ready for the grand finale and just in time, because my fingers were getting worse and using them was getting more difficult. 

How much worse? This much

But - when I went back to the surgeon, he said "Too bad you didn't have this done when I suggested it because I'm retiring." Not the most sympathetic doctor, but also not the only one in the city.

Now it's done and I have new knuckles. Despite telling Debby's story of success with this I had doubts, especially when a trusted friend told me that doctors in her city were no longer willing to do this procedure.

However, with a US friend who has RA finding that three of her fingers were so badly displaced that she has lost hand function I carried on.

This is a picture of what I believe my knuckles look like on X-ray now. I don't have an x-ray of my own since the doctor did not do one. Now I have an implant in all 4 of my knuckles (MCP joints).

Silastic implants

You might wonder whether the operation was a success.

It was done ten weeks ago. I started in a cast, then graduated to various splints. Every week the Occupational Therapist would adjust both the night splint and the one I wore during the day. 

The day splint became smaller as I was able to gradually start moving my joints more and to start on a gradually increasing exercise program. I felt that the splinting and the exercise program were as important to the operation's success as the surgery.  

Now I am able to write again and to type faster. The occupational therapist who is still helping me advised me to wear a small splint to keep my fingers straight during the day, and a splint from fingertips to forearm at night. In retrospect I think that the surgery was only half of the procedure - occupational therapy and dynamic splinting was vital for the final success.

Here's the finished product - my hand today! Better than before.

It's a perfect example of the teamwork between professionals that is required for the best results to patients.

Perfection  is impossible, but I expect to be able to use my hand for a lot more years now, and better long-term function was the main reason I had the surgery.

HCSMCA in Vancouver

The #hcsmca symposium felt like a family reunion, or a live in person tweetchat, from walking in the door of the room in the morning, right until I left for home.

Feels as though we've known one another for a long time

The atmosphere in the (un)conference room was excited and exciting. Robyn Sussel was an excellent moderator and starting with a prayer for the day from Syexwaliya of the Squamish Nation was an inspiring beginning.

Pat Rich talked to us about only building what you can maintain, and quoted @Berci. "I want every medical professional and empowered patient worldwide to feel connected to many others... when they have questions or just need a good word or support.  Social media has the potential to become this bridge between people"

Colleen Young talked about the strong sense of belonging and the give and take in social media - the way the Twitter welcome wagon is ready for anyone. And one of the biggest achievements of social media is that it helps people to take a step back - it breaks down silos, is a fountain of plain language, and creates circles of trust and real conversations. We need that trust to be able to share

So we all came to Vancouver to do more of that, and to try to make a road map to see HCSMCA into the future.

Larry Chu asked us how we use technology to break through silos and achieve mutual trust and inclusivity.

Lee Aase gave us sharing and learning from the Mayo Clinic and talked about how having a group of co-belligerants helps break through the blocks such as patient privacy.  

His point about healthcare shifting and emphasizing respect over power was chosen as one of the top 10 ideas of the day. Larry Chu added to that with "How might we improve healthcare if we focus on respect instead of power?"

Another idea from Lee Aase "Don't let perfect be the enemy of good." and a top idea from Colin Hung "Change the world locally." That one is worthy of a  shirt.

More advice from Colleen Young "Model the behaviour that you want to see and spend time on the people who do model it."

Then with these two memorable statements -

"Take one bite out of the elephant at a time." Robyn Sussel

"The Law of Two Feet - You can move to another group at any time."

- we were ready for 12 challenges in 50 minutes.

I picked Challenge #7: Using social media to advocate for policy change
Deb Maskens submitted it and led the group. It was a real learning experience for me.

We talked about engaging with policy makers, strategic positioning of advocacy, mutually beneficial partnerships, moving from slacktivism to interactivism, the qualitative shift in how people are engaging now.

Incremental change is a key as we ask why research, evidence and common sense do not carry the day. Question: What is respectful political advocacy?
One obstacle noted is that when patient groups meet with the opposition party they lose credibility with the government.

Another important barrier is the structural exclusion of advocates from decision making.

Our group of Canadians using social media, who have a passion for changing the healthcare system, had a very rich discussion about changing the system - in fact we decided to start using a new hashtag (I just checked and we will be the first) #HCsystemChange. 

We sent ourselves a postcard from the future, and since this very useful conference also gave us the ability to keep in touch with one another, we will be working on making some progress.

All of the challenges had ideas that were usable. I think the largest challenge we are faced with is making use of what we learned, and keeping in touch with our community. The value of community was obvious at the Unconference, and I think we all learned how effective it is to have the whole team working on solutions.

Personally #hcsmca has made a large difference to my life and seeing virtual community change to real life community in BC was a powerful experience.

Meanwhile I look forward to the next Road Trip!!

Andre Picard with delegates from #hcsmca

More ideas:

Proceed until apprehended. Pick a back-burner idea and go for it on Monday.

Involve patients.

Use technology to support patients.

Don't let perfect be the enemy of good.

How do we listen to and use stories and then turn the stories to action?