Who Should Fund Patient Organizations? Who is Funding PAN?

[A Former User]

Who Should Fund Patient Organizations? Who is Funding PAN?

First, who’s funding PAN? We are! As a registered non-profit, start-up costs are coming
out of our own pocket. Once we are underway with an active and substantial
membership, we will be in a position to seek funding that enables us to remain
independent, transparent and self-governing. As a member, your voice is part of that future.

In the January 17, 2017 issue of the Journal of the American
Medical Association Internal Medicine are two articles to start
off a discussion here. The first is research and the second is a commentary.
Both are free to download. PAN is not a "patient advocacy" organization, but the discussion is relevant to our future. Also, you may want to think about these issues as your role as a Patient Advisor grows.

“Patient Advocacy Organizations,
Industry Funding, and Conflicts of Interest” by Susannah Rose, Janella
Highland and Matthew Karafa in JAMA Internal Medicine Jan 17, 2017

http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2598094

“Most advocacy organizations receive money from industry;
therefore, increased transparency and robust conflict of interest policies and
practices are needed to help these non-profit organizations maintain their
independence.”

Here is the commentary…

“Toward a Healthier Patient Voice: More Independence,
Less Industry Funding” by Ray Moynihan and Lisa Hero in JAMA Internal Medicine,
Jan 17, 2017

http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2598090

“Just as the industry funding of clinical trials has been
associated with more favorable findings, patient groups also face
risks of bias when accepting money from companies seeking to expand markets for
their new tests and treatments.”

This is a topic that others have worked on
very conscientiously, particularly in the UK. I recommend these guidelines on
funding at arms length and with full transparency to avoid bias and just as importantly,
without the perception of bias. These reports are also free to download.

http://www.abpi.org.uk/our-work/library/Documents/ABPI_NV_Guide_FINAL.pdf

http://www.amrc.org.uk/publications/essential-partnership-principles-guidelines-working-industry

So in Canada the JAMA articles seem to beg the question of what are the alternative sources of funding? Where is the independent un-biased funding that should be underwriting patient and community voices?

Even government funding may deter criticism of the hand that feeds you. I think the key is diverse funding. What do you think?

[A Former User]

When I heard about the report of the Sexual Abuse Task Force in Ontario, which looked at sexual abuse of patients by health care professionals, there was one aspect that completely held my interest.

It was the fact that there was very little input by patients or patient groups during the information gathering. The report contained a sentence that referred to this, and the potential cause - that patients groups are starved of revenue. That was totally not mentioned in media reports - I heard this from a lawyer who did an analysis of the implications of the report for another group of which I am a member.

It would be great to take some action on this. Patient groups are starved everywhere - not just in Ontario

[A Former User]

To me, this issue became apparent during the news of the EpiPen being jacked up to stratospheric prices, with the motivation for publicizing this accomplished by parents on Facebook. There was pure radio silence from patient advocacy groups related to food allergies. Why? Because these groups received funding from the company that makes EpiPen. Don't bite the hand that feeds you. Talk about a conflict of interest!

Patient advocacy groups centred around a disease or type of ailment are particularly vulnerable, since pharmaceutical companies want access to this base.

Just thinking out loud: would provincial ombudsman offices be willing to fund us as an independent group looking out for patients and families?

The hospital ombudsman is a standing item on our monthly meetings, and I have had interactions with Quebec's Protecteur du Citoyen, the provincial ombudsman.

Here in Quebec, the patient committees that are found in hospitals and long-term care facilities (it would a residents committee in this case) are government-funded via an independent envelope from their institution. The budget is managed 100% by volunteers, with all the good and bad that this entails. These committees play a role in informing patients of their rights, accompanying patients if they wish to make a complaint, and collaborating with staff on improving quality and service.

The budget must be used for purposes of fulfilling the government mandate of a patient or resident committee. We submit an annual report to the Ministry of Health each year.

Please note that although this may overlap with the raison d'etre of PFACs, the patient committees here do have an advocacy role to play which may or may not be acceptable in certain PFAC structures.

[A Former User]

How should we fund PAN on an ongoing basis?

I think one source might be the Federal Ministry of Health. I think it might be too political to receive funding from a province/territory but perhaps if they all gave us something???

Are there private foundations who might be interested? Any more thoughts?

[A Former User]

There are (at least) two priorities that concern me with PAN's future funding. First, that we maintain our independence. Second that we have such a multiplicity of funders that the inevitable swings in policy and finances don't affect our core operations. We will never have large costs, so we may do well with relatively small contributions from a great number of sources. Fundraising costs should not be an organizational preoccupation.

Independence means no for-profit interests. We serve the public interest broadly speaking, so I would think support could come from publicly-funded and non-profit organizations. We may wish to consider charitable status, carefully weighing advantages and responsibilities.

National agencies would be logical funders, like the federal Ministry of Health, but also CFHI that promotes patient partnership, CIHR that funds patient partnered research, and undoubtedly more organizations. Also, Accreditation Canada aims to partner with patients as accreditation surveyors, and may see value in our success.

Provincial ministries of health and provincial quality councils and their counterparts might be natural funding partners. Also universities and professional associations that support patient partnerships to advance their goals in education, scholarship and community building. Larger providers and provider association may wish to add their names as supporters.

Community foundations and private philanthropy might also add a welcome mix in funding the contribution PAN makes to robust participatory democracy and an inclusive equitable society. Family foundations may wish to act to strengthen the patient voice in healthcare for improvement when family history is marked by the experience of care failures.

This will certainly be an interesting journey for PAN!

[A Former User]

I do think a lot of funders contributing their bit helps us maintain a stable base. We don't need a lot to keep the doors open but if we want to connect and reach advisors face to face, then the costs grow. Government either directly or agencies and foundations who support our goals are the obvious ones to approach.

What does everyone think about individual, private donors? Our experience elsewhere is that this is great but only contributes a very modest amount.

[A Former User]

The Arthritis Society gets funding from the LHINs but it gets to them through the one in Mississauga I think. That provincial funding from the Province of Ontario must account for the difference in services offered in other provinces, compared to my location.

I agree that individual private donors are unlikely to contribute large amounts. I did see 2 announcements in the Globe and Mail this weekend about million dollar donations - one was for Patient Centred Care at Trillium. That's getting closer to us in a sense.

Annette

[A Former User]

Here is an easy-to-read summary of the findings in the article Carolyn mentions, plus another on the same topic from NEJM

http://khn.org/news/patient-advocacy-groups-rake-in-donations-from-pharma/