Consultations with members of the public

[Annette McKinnon]

I participated in a consultation to get the patient point of view on potential legislation. At the same time I was able to see the similar request as put to a group of professionals who may be affected by this change.

As patients we got the 13 page document (pdf) to read through and had a 30 minute webinar with the person who will write the report. We had a 7 day turnaround between initial request and "response needed by"

The professionals got a written request to consult on the same document 7 weeks before the due date of the response, and were given the objectives of the consultation as well as some questions to guide their responses.

I think the contrast in the way the 2 groups were treated is stark.

Of course you will not be surprised to hear that the document is aimed at patients and at professionals, and that the grade level of the document is Grade 17 or college grad, and "very difficult" to understand. I ran it through a document reading level checker.

Anyone else seeing this happen?

Annette

[Denyse Lynch]

Yes, Annette, I too have experienced:

-being asked to read a document and provide response in a very short time frame and Grade 17 +++ comprehension level

After trying to accommodate these conditions a few times, and becoming frustrated, then angry, I realized standards set out by HQO and specifically written to guide researchers in how to work with PFA's were not being followed. I can only think the reasons were one or, some of the following:

-researchers were unaware of the standards for working with PFA's, no one was coaching/providing researchers feedback on their competencies (abilities, skills, knowledge) to meet the standards; the coaches were unaware, did not know the standards, or, perhaps did not have the appropriate competency coaching/communication feedback skills, knowledge to effectively enhance researchers use of the standards.

Now, before I accept requests I take into account: if the request is meaningful to me, if the time frame in which my feedback/participation is requested is reasonable, how challenging the material is to comprehend (i.e. how many times I have to re-read the material, to get the point(s)), how clear the objectives are and how often I have to consult a dictionary/regular or, medical/clinical). I know the HQO PFA standards & I compare how well the request aligns or does not align with them.

If they don't align, I provide constructive feedback on what makes the request not a good fit, as per the HQO standards. I refer to the HQO PFA standards, so they will become more aware or, better understand that these are "key" in working effectively with PFA's.

Must say, this has saved me much frustration and makes for better use of my time. I think the HQO guidelines, standards are not well understood or being used/interpreted effectively. They are very clear, easy to understand.

Best, Denyse

[Lorraine Bayliss]

This information regarding the value of using the HQO standards is very helpful. When I have been asked to participate in a research proposal, I provide feedback indicating that this paper is not presented in a manner that supports the patient being able to provide informed consent. CIHR is looking to address this issue as part of funding approval.

Lorraine

[Alies Maybee]

Lorraine et al, I have been part of a group at the Canadian Frailty Network developing a cfn-guidelines-for-lay-summaries.pdf for research. Feel free to share with any of your research partners.

I'm not sure what HQO PFA standards you refer to, Denyse. Do you have a link? Alies

[Denyse Lynch]

Thank you, Lorraine - think we are on the same page.

Adding your wording "the paper presented does not support the patient being able to provide informed consent" along with including specific examples of where/how the proposal does not meet HQO standards would facilitate working together. After all, HQO standards were designed, publicized to all, in order to meet "both" researchers' and patients' needs for clear, concise, relevant communications. "Communication Initiators" by virtue of their "initiating" communication, inherently have the upper hand, so from the outset bear the responsibility for clear, concise, audience relevant communications.

Because they are not proficient utilizing the HQO standards, currently researchers' proposals are creating an imbalance in what is supposed to be a "partnership" relationship.

This leads me to another idea - if 'Communication Initiators' are not meeting the needs of the patients in order for them to make an informed decision, the onus is then on patients. Communication is always a TWO-WAY street, creating re-actions, positive, negative, neutral, confused. Designing a "simple" feedback survey that patients could use, would indicate how well the proposal meets the HQO standards for patient engagement - comprehension i.e. meet the patients' knowledge, information needs. It would also enable patients to be/to feel more engaged, that their perceptions, roles, really matter.

Currently researchers have the upper hand in determining 1) what to research and also 2) how to conduct the research and 3) how many patients are invited to join. This is not mutually beneficial nor does it really promote a collaborative working relationship.

Essentially, a survey would make it: easier for patients to decide whether they can participate, give consistency to the proposal process, allow HQO standards to be implemented/embedded researcher & patient-wide, leveling the playing field. We could all be more productive with streamlined communication processes and get to our goals - a quality, sustainable, cost effective health care system.

Glad to hear CIHR is looking to address this issue and appreciate your input.

Very best regards,

Denyse

[Denyse Lynch]

Alies... I printed off quite some time ago, "Best" Practice Checklists (some of which are considered standards i.e. re communication skills, jargon, using active versus passive voice) for Health Care Professionals-

1. Chairing Meetings - "Before you Get started" at www.hqontario.ca/toolsandresources (not there any longer) but it provided very good, what to do's re how to engage the patient/caregiver & benefits of doing so

2. How to Support Patients/Caregivers to share their Stories, Planning, Crafting a letter, (questions for professionals to consider e.g. what's the purpose & goal, what types of stories,) Communicating Clearly, Getting Consent etc.. at www. hqoontario.ca/Portals/0/documents/pe/invitation-letter-template.docx (not there any longer )

3. A Plain Language Checklist which includes: why you should use plain language, focus your communication,tips for email, being Concise, Use of Bullet Points, Images,Avoiding Jargon, Acronyms; references to web sites for Using active voice when writing, Readability Calculator, Decision Making tool, Plain Language Thesaurus for Health Communications Available WEB SITE: www.hqoontario.ca/portals/0/documents/pe/quick-tools-checklist-communicating-clearly-pc.pdf

This last web site DID work, but sent email to HQo to find out where the other 2 can be found.

These are what I've been using to gauge how well a request is communicated that enables me to make a decision about whether I can be involved with a proposal.

Hope this helps. Denyse

[Lorraine Bayliss]

Denyse,

It is moments like this when I read information such as you and other members of PAN have shared that I feel truly grateful for having the opportunity to participate in PAN. As I prepare for the patient engagement webinar presentation tomorrow, I am going through my notes to highly key points that you have brought to my attention. I definitely will bring forward insights from PAN when I present to Researchers at the Masterclass in November.

This helps immensely. It is a journey.

Grateful for your time and insights.

Lorraine

[Alies Maybee]

Lorraine, good luck tomorrow!

Yes, sharing these conversations I find not only that I learn a lot but it helps give me confidence in speaking up. Cheers! Alies

[Alies Maybee]

Denyse, at your instigation I have been going through the resources again on the HQO site. I'll look specifically at those you mention.

The IFPCC piece on stories is actually very good so I may refer to that in our talk. Thanks, Alies

[Denyse Lynch]

Lorraine.... yes, yes, yes, PAN is the glue, mod podge, paint, and all other elements we contribute that spark ideas, construct visions enabling us to forge ahead and challenge our engagement initiatives. Along the way, we build momentum, gather and exchange our thinking with others, broadening our perspectives that will lead to "health care system improvements."

I too join you in crediting our PAN colleagues for helping to push the boundaries of my thinking and challenge my perspectives. Where else can we have such an exchange that does all this?

Many thanks and success to you Lorraine, in your endeavours and all PAN colleagues.

Denyse :)))))

[Denyse Lynch]

Alies, thanks very much for the CFN information - clear, concise, easy to comprehend - train everyone on this :)))))

Denyse

[Alies Maybee]

Denyse, it took many iterations and a number of people both researchers and PFAs to hone this down. I am quite proud of the result.

It touches on a larger issues, should academic language change? The use of third party, clausal sentences etc. makes academic writing at best archane at worst incomprehensible even to fellow researchers.

Thoughts! Alies

[Lorraine Bayliss]

Thank you for sharing this resource. It certainly does address the larger issues and I can understand why you feel proud of this document. I have some upcoming conferences in November and it is a resource I plan to share. It emphasizes the importance of the patient taking risks to ask important questions that clarify the research process and findings so that patients are able to make informed decisions. Most research can be explained with clarity that results an informed patient.

My experience with the ODPRN has been so positive in that they chart findings, produce graphs and provide the patient support group with opportunities to ask questions for clarification. Researchers with the ODPRN always respond with, "That is a great question??" They follow up with every effort to ensure understanding that will facilitate decisions around the drug formulary. I am impressed with their creative ways of shaping data that creates clarity and understanding. They exemplify what "partnership" means. They have a diverse group of advisors, representative of geographically areas, gender, ethic groups.etc.

ODPRN has participated in the the PIR webinars and are currently planning on presenting their own webinar beginning in January on POR. There will be 6 modules.

Sometimes I feel the greatest danger to POR is this act of tokenism and unwillingness to form partnerships. When I see it happening in places like the ODPRN it is like a ray of light that brings hope.

[Annette McKinnon]

It's interesting to hear that ODPRN will be present a webinar in January. Will it be open to anyone who is interested?

ODPRN does sound quite responsive.

I am collecting points to bring up at the Community Advisory Council of my hospital. It seems to me that there is a huge variation in the way they work and how much they do.

Annette

[Lorraine Bayliss]

The ODPRN webinar will be available to all stakeholders, Last year they held a one day conference with a large part dedicated to capacity building of POR for their 23 community reps. We left with a powerpoint presentation for the USB key to pull up and review the data. Following our online PPAWG meeting I spoke to Moira Stewart and asked her to provide me with a list of the areas required for further clarification. Please find the 5 gaps identified by the Working Group on Training and Capacity Building. these are to be addressed by the upcoming POR programs like PE in PHCR) of which I am one of the patient members.

Share own needs and understand others' needs for information/challenges/ or knowledge gap to identify topics for relevant study

Clarify a problem or topic into a research question

Work as partners with patients and families, health care professionals, and researchers

Communicate with all stakeholder groups using techniques such as active listening

Ethics for patient-oriented research

I am spending time this weekend reviewing the first module of the ODPRN. I have shared the above information with ODPRN and they indicated that this information was VERY helpful as they move forward with their webinar planning.

[Annette McKinnon]

You'll love this paragraph Denyse, about guideline develoopment

"Potential barriers to successful external review and public comment include an insufficient understanding of the guideline development process, contradictory comments, and the resources and time required to collate and respond to comments [1]. Furthermore, while not described in the literature, the format of draft guidelines shared for external review and public comment is likely a major barrier to meaningful PPI. In this study, there was no evidence that developers prepare patient- and public-friendly guideline documents for draft review. With difficulty understanding medical terminology described as one of the most common barriers to PPI in guidelines [2, 11, 13–15], current public comment practices may be more tokenistic than meaningful engagement."

This is a tweet I am planning to tweet soon - just to give you the link to the paper

Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies. http://bit.ly/2lqHLI8 "numbers are discouragingly low"

[Lorraine Bayliss]

This is an American study. Those who evaluate proposals for CIHR funding must meet the following criteria as assessed by those reviewing the proposal:

Patient engagement into research

In order to ensure that the applicants have meaningfully engaged the patients, it is vitally important to us that patients, family and informal care-givers be part of the review panel. We are looking for expertise that is based on the experiential knowledge that is gained through lived experience with their condition and with being engaged with the health care system or with health research (not necessarily on the science of the proposal but on the patient engagement component). Examples of questions from a patient perspective include:

Do you feel there is evidence of appropriate and meaningful integration of patient engagement mechanisms to ensure that the program of research has been informed by patients from the onset and will continue to be informed by patients?
Do the proposed budgets outline expenditures that will support patient engagement?
Do you see the relevance of the research program for end users (e.g., patients, health service providers, health policy makers, etc.)?
Do you feel that the research program reflects patient priorities and is focused on improving patient outcomes?

Funding is dependent on meeting this criteria. I have a sense that the research proposal you were named in did not meet this criteria, however the researcher misrepresented your involvement. It seems a problem of ethics.

[Annette McKinnon]

A good set of questions. Thank you Lorraine.