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

Volunteering With Chronic Illness

Many people diagnosed with a chronic disease become very knowledgeable about their health problems.  Some like Kelly Young turn their expertise and skills into a world-wide platform.  I read that 10% of people with Rheumatoid Arthritis Disease in the US are members of  RA Warrior    We all appreciate her advocacy and her awareness efforts with doctors and with government.

                                                                             Kelly Young


Another example of people with RA helping others is the project initiated with RA Guy's call for pictures of hands that resulted in the Show Us Your Hands project, which turned into an international movement to raise awareness of inflammatory arthritis.  The team that worked on this went on to produce a poster and a book for sale as a fundraiser.  What a successful project that is!!

Show Us Your Hands

Many others contribute through blogging and by providing on line support for their peers on Twitter, Facebook and online groups. Of course those in clinical trials also make a very concrete difference. There is a real spirit of teamwork in the chronic illness community.

                                                                  Teamwork

Aside from the online opportunities there are some programs that it's possible to participate in in real life if you are lucky enough to be close to a center that supports them. 

There's a very colourful patient I recently met who is most enthusiastic about the Health Mentor Program which I also take part in.  Health Mentors are defined as people living with chronic health challenges.  They meet and interact with groups of students in various health disciplines such as nursing,occupational therapy, MD, social work, physiotherapy and pharmacy.

In the groups the students explore the impact of a health challenge, collaborative assessments,ethics and professionalism, and patient and client safety.  I can't speak from a student point of view but as the person with chronic illness I find it very interesting to meet students who are on their way to achieving a goal that takes a lot of work and dedication.

The program is run by Sylvia Langlois who is Assistant Professor, Occupational Science and Occupational Therapy at the University of Toronto

The member I mentioned has asked patient participants to blog on his website.  He calls himself and his site Patient Commando so I expected to meet a man wearing camo and boots.  But no, he's one of us - a person living with chronic illness who is trying to do something about it and who has encouraged like minded people along the way.

                                   Zal Press Patient Commando
You've got to agree that this is a man who gets noticed.  Patient Commando creates social impact by providing platforms that amplify the patient voice.  Here's a  link to their site with 3 patient stories about the Health Mentor Program.

And here's a bonus link to a quiz that can help you to determine what kind of a volunteer you are:  http://www.getinvolved.ca/vquiz/english/   from The Arthritis Society